Shanley Stuteville, 25, has been a lifelong patient at Cook Children’s after she was diagnosed with epilepsy at 3 years old. When she was 19, she underwent life-changing lesionectomy surgery and hasn’t had a seizure since 2020. This year, she decided to give back to the community of patients at Cook Children’s while also pursuing her dream to help others.

Shanley was first brought to Cook Children’s by ambulance after her first seizure. She had many neurology appointments with Howard Kelfer, M.D., who became her primary care doctor.

When epilepsy surgery became an option, she also started seeing Scott Perry, M.D., pediatric epileptologist and Medical Director of Neurology for Cook Children’s. Cook Children’s has a Level 4 Epilepsy Center.

“I can’t imagine what things would’ve been like if I hadn’t had Cook Children’s on my side throughout this journey. I truly can’t say enough about how incredible the doctors and staff have been to me since I was a child,” Shanley said.

Experiencing testing in Cook Children’s Epilepsy Monitoring Unit

To pinpoint where her seizures stemmed from in the brain, Shanley stayed in the Cook Children’s Epilepsy Monitoring Unit (EMU).

“I knew when I first met Shanley that I could help her,” Dr. Perry said. “Her focal seizures were clearly coming from a single area of abnormality in her brain that I felt confident we could safely remove.”

Staying a few days in the EMU can be scary and Cook Children’s does all they can to make the experience feel as safe as possible. Shanley has a loving support system of family and friends, which makes all the difference in experiencing life with seizures, the side effects of seizures and medications, and the limitations that epilepsy can bring.

“Whenever I would have to stay up all night prior to the EEG testing, my family would make a fun themed party out of it and we would stay up watching movies and playing games. My friends also came to visit and everyone’s support made all the difference for me,” Shanley said.

Having epilepsy surgery

Shanley went through necessary testing to be considered for epilepsy surgery of a lesionectomy, which removes a lesion or abnormality in the brain.  For a long time, she thought she would never be a candidate so when she found out she was, she and her family were so grateful they had finally found hope to control her seizures.

“I had never been so confident that I wanted to do something in my entire life. To have a chance of recovering from epilepsy was incredible and something I couldn’t pass up,” she said.

The surgery process went smoothly for Shanley and even Dr. Perry noticed how comfortable she felt about the surgery.

“I recognized immediately her engagement in the surgical process and how she could change how people view epilepsy surgery when she shared her plans to create a children’s book about visiting the epilepsy monitoring unit,” Dr. Perry said. “The book she and her aunt created was amazing.”

How epilepsy surgery changed Shanley’s life

Shanley has been seizure-free since July 2020. It has been a wonderful four years for her with some challenges as well. Deciding to slowly reduce epilepsy medication after brain surgery is common for a lot of people and she experienced side-effects like anxiety as well as learning how to suddenly live her life without epilepsy anymore. She had to grow her inner confidence again and learn how to live with how her brain worked differently.

Even with the challenges, she’s so glad she chose to have surgery and experience the transformation it has made in her life. In fact, she is currently studying and plans to graduate with a Master’s degree in psychology in May 2025.

 “To see her all these years later, seizure-free and living out her own dreams means everything to me,” Dr. Perry said. “Personally, it gives meaning to what I do daily. But to then know she is pursuing psychology is even more impactful given how often children with epilepsy need the services of psychology. I can only hope we get Shanley to come back to work for us.”

Shanley’s love of art and donation to the “neuro art collection”

Shanley has been creating art since she was very young. Her favorite kinds of art include mixed media illustrations with colored pencils and gouache paint, or digital art like the piece she created for the “neuro art collection” at the Jane and John Justin Institute for Mind Health which was started by Dr. Perry.

“Shanley’s donation to the neuro art collection is exactly what I envisioned when my wife and I first commissioned the original art collection. I knew that the neuroscience community was full of artistic and creative people. I knew their art could inspire others and I hoped that my own patients would one day give back to our collection. Shanley is the first former patient to contribute her talents to our collection and the first former patient to benefit all the patients that come behind her,” Dr. Perry said.

Shanley’s intention with the piece she’s donating is to give people the feeling of hope. With her experiences living with epilepsy, her surgery and all of the ups and downs of life, she’s always tried to look for the “rainbow after the storm” and hopes to convey that in her art.

Hope for the future and advice for people battling epilepsy

With her goal of getting a degree in psychology next year, Shanley plans to have the opportunity to work with children who have chronic neurological disorders like epilepsy. For a long time, doctors have only treated epilepsy symptoms, not the emotional, social and psychological challenges that living with epilepsy creates. She also wants to help people who’ve had challenges readjusting to life after their long-term disorder is suddenly gone.

Shanley thinks it’s important for people battling epilepsy to remember they are not their disorder. Living with epilepsy and experiencing surgery has helped Shanley become even more empathetic. She encourages people to look for the positive and for opportunities wherever they can, to lean into what they love and to remember that they aren’t alone.

A panel of scientists addressing U.S. Congress members on Wednesday includes Professor Christos Papadelis, Ph.D. representing Cook Children’s research and innovation to treat pediatric epilepsy.

Dr. Papadelis leads the Neurosciences Research Center at Cook Children’s, which undertakes groundbreaking studies and collaborates in the care of patients with seizures.

He’s among the experts invited to speak at the Rayburn House Office Building in Washington, D.C. as part of Brain Mapping Day. The Society for Brain Mapping and Therapeutics (SBMT) sponsors the annual event. Its goal? Educating federal lawmakers about current approaches to treating neurological and psychological disorders.

Brain Mapping Day also aims to shape future policies and funding for health care by promoting new strategies to advance the neurosciences.

“It’s a fascinating field, and so much progress has been made in the last several years,” Dr. Papadelis said. “But so many things should be done to translate the existing technology to the clinical practice. We need more interface between the translational research and the clinical teams to bridge them together.”

Dr. Papadelis wants to share his enthusiasm for the strides his team at Cook Children’s is making to pinpoint the exact location of the brain where seizures originate in patients with epilepsy. He and his research colleagues combined two types of imaging that measure the brain’s electrical and magnetic activity. When a patient needs surgery to control their drug-resistant seizures, the researchers can provide the neurosurgeon with the precise point of seizure activity. That mapping tool helps ensure a successful surgical outcome while minimizing the risk of complications in other areas of the brain. 

Dr. Papadelis earned a spot in the lineup of presenters because of his insights and leadership in neurosciences research. He’ll address House members and congressional staff in a portion of the program titled “Detecting Neurological and Neuropsychiatric Disorders Earlier Using Brain Screening Protocols. What Should Be the Policy?”

His overview covers three main points:

• Effective technology is already available.
• Many patients can’t access the technology because they lack health insurance, or insurance approval is delayed, or other barriers.
• More research funding from the National Institutes of Health (NIH) is needed to continue to make advancements.

He plans to talk specifically about pediatric epilepsy. He wants to make the audience on Capitol Hill aware of the research Cook Children’s is doing to help patients become seizure free – and how policies in health care affect those efforts.

M. Scott Perry, M.D., epileptologist and head of Cook Children’s Jane and John Justin Institute for Mind Heath, said the high-level research by Dr. Papadelis and his team is resulting in better understanding of nervous system disorders. Their contributions are getting noticed and putting Cook Children’s on the map.

Dr. Perry said he hopes Dr. Papadelis’ presentation in Washington, D.C. attracts additional collaborators and brings more exposure to the Cook Children’s research model, which operates outside of a traditional academic setting. 

“By focusing on research that delivers near-term benefits to the patients we serve daily, Cook Children’s is able to grow a strong bond between clinical medicine and research that benefits our patients, our medical providers, and our research team -- all in the course of day-to-day practice of medicine,” Dr. Perry said.

William Stigall, M.D., Chief Research Officer, said the invitation to participate in Brain Mapping Day reflects a growing recognition of the research and clinical excellence at Cook Children’s. He credited Dr. Papadelis with academic depth and rigor that complements the work of Dr. Perry and other physicians on the clinical side.

“Dr. Papadelis and physicians at Cook Children’s are performing cutting-edge research and are extraordinarily well positioned to offer insights to our nation’s leaders,” Dr. Stigall said. “The more the rest of the world knows about us, the better the rest of the world will be.”

More about Dr. Papadelis

Born in Athens, Greece, Dr. Papadelis earned a doctorate in Medical Informatics. After stretches of research in Japan and Italy, he came to the United States in 2011 as an instructor in Neurology at Harvard Medical School. He was founding director of the Clinical Magnetoencephalography (MEG) Program at Boston Children’s Hospital.

He moved in 2019 to the Neurosciences Research Center at Cook Children’s in Fort Worth. He also is a Professor of Pediatrics at the Texas Christian University Burnett School of Medicine and of Research in Bioengineering at the University of Arlington.

He’s excited to tell policymakers about a five-year brain-mapping study he’s undertaking, funded by a $2.3 million grant from the NIH. Dr. Papadelis described the project as a unique technique that uses more than 550 sensors on a patient’s head to simultaneously record electrical and magnetic activity in the brain.

“This setup we have here is unique in the country and helps us to identify non-invasively and with high precision the area in the brain to be ablated or resected in surgery in order for patients with drug-resistant epilepsy to become seizure free,” he said. With additional NIH funding, he said, more progress can be made across neuroscience.

He points out that the Justin Institute at Cook Children’s bridges the gap between research and clinical application. The two areas connect to integrate new technology in ways that directly impact the patients.  

Dr. Papadelis, a naturalized American citizen, said he’s honored by the opportunity to share his perspective at the Capitol. And he’s proud to represent Cook Children’s and his research colleagues.

“We're motivated, and we have passion for what we're doing,” he said. “Although we're not physicians, we work closely with the clinical teams, and that relationship helps us feel a responsibility to these kids and families. Every time I see patients in the elevator, for example, I feel emotional. I'm part of helping these kids.”

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Whenever Luke Waggoner’s seizures start ramping up, his mom Ami can make a switch on her phone that changes the rhythm of electrical activity delivered to his brain.

Inside Luke’s body is a network of tech devices and wires – running from his head to his abdomen – designed to help control his seizures. Deep brain stimulation (DBS) isn’t a cure for his type of epilepsy. Instead, it’s an adaptable tool used to keep Luke’s worst seizures from getting out of hand.

Ami is amazed at how much Luke’s health and quality of life have improved since July 2021, when neurosurgeon John Honeycutt, M.D. placed a pulse generator in his chest delivering electrical impulses to leads implanted in his brain.

Prior to receiving the DBS system, cluster seizures caused Luke to need emergency care at the hospital several times a month. Now, at age 16, he still has seizures every day. But the seizures no longer escalate to the point where he has to be hospitalized.

"Just to keep us out of the hospital has been amazing,” Ami said. “It’s been a life-changer for Luke.”

Luke’s family in Arlington works closely with the specialists at the Jane and John Justin Neurosciences Center at Cook Children’s in Fort Worth. They communicate frequently to track how Luke responds to different DBS settings. 

Warren Marks, M.D., director of the Movement Disorders Program at Cook Children’s, described DBS as a way to send small electrical impulses to specific areas of the brain. That stimulation affects the abnormal electrical bursts that cause seizures in Luke and other people with epilepsy. In simplest terms … DBS changes the brain’s electrical waves in hopes of reducing the misfires that lead to seizures. 

“I would think about DBS as being similar to medications, except it’s extremely targeted. Therefore, you can reduce most of the side effects that you see with medication,” Dr. Marks said. “We’re putting the impulses only where we want the impulses to be. We are not bathing the brain with electricity like we bathe the brain when we give medications.”   

Luke takes four medications daily, down from five prior to starting DBS.  Those meds likely contribute to Luke’s grogginess and slurred speech. That’s why his family and doctors hope he’ll be able to scale back even more on the dosage, as long as DBS continues to be effective. 

Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s, said DBS not only gives Luke better seizure control, but clearer thinking and more independence. She said yes last year when Luke asked her if he could go to Disneyland, the farthest he’s ever traveled from Cook Children’s.

“The impact of this is not just immediate, but it’s continued,” Dr. Keator said. “Granted, he still has seizures, but the improvement is giving him freedom that he didn’t have before.”

An epilepsy awareness campaign called Purple Day occurs every year on March 26. On this Purple Day we wanted to highlight the resilience that Luke and his family have shown in managing his care collaboratively with their medical team. Here’s the update.

Treatments for Epilepsy

The U.S. Centers for Disease Control and Prevention estimates that 370,000 children nationwide have epilepsy. The chronic disorder has no cure and often no identifiable cause.

Luke was diagnosed at age 5 with generalized epilepsy affecting both hemispheres of his brain. He experiences a variety of seizures; they might cause muscle spasms, sudden stiffness, or blank staring into space. Sometimes Luke won’t be able to speak, but he can give a thumbs up. 

Medication successfully controls the seizures in up to 80% of children with epilepsy. But not in Luke’s case. He has Lennox-Gastaut syndrome, which is especially difficult to control. He received a vagus nerve stimulator (VNS), a pacemaker-like device implanted in his chest. Even with the VNS and medications, Luke continued the cycle of big seizures and frequent hospitalization. 

By 2021 it looked like Luke’s next course would be a corpus callosotomy, an irreversible procedure. Corpus callosotomy severs most of the connections between the two halves of the brain, aiming to prevent the most dangerous and disabling seizures. That’s when the doctors at Cook Children’s proposed a less invasive option. 

That option was DBS, which the movement disorders specialists at Cook Children’s had already utilized since 2007 for about 150 patients with a condition called dystonia. DBS would be a new therapy for pediatric epilepsy. The Waggoners agreed to give it a try.

So in July 2021, Luke became the first pediatric patient in North Texas to undergo DBS for intractable epilepsy. He’s believed to be the first child in the United States to receive a newly approved sensing lead technology DBS system for epilepsy.

The network has three main components:

• Leads (pronounced “leeds”) – tiny electrodes embedded in Luke’s thalamus, the brain’s relay center for transmitting signals. The leads deliver electricity directly to the source of his disruptive waves. They’re held in place by caps screwed into Luke’s skull.
• Generator – a mini-computer under the skin of Luke’s abdomen. Wires run from the generator through his neck to connect to the leads.
• Programmer – a tablet that regulates the strength and frequency of electrical impulses per second. When he needs an adjustment, Luke holds the programmer at his abdomen, next to the generator, and his mom changes the setting from her phone. 

“With a corpus callosotomy, you essentially take out most of the connections between the two halves of the brain so that they can’t cross signals from one side to the other,” Dr. Marks said. “What we tried to do with the DBS is to simulate that electrically without going through the actual surgical disconnection.”   

Showing Improvement

Dr. Marks and Dr. Keator continue to monitor Luke to determine his tolerance for different electrical amplitudes and speeds. When the Waggoners go in for appointments, Dr. Marks will tweak the settings on Ami’s phone to try new modes, such as synchronized versus non-synchronized.

Ami said Luke reacts best to high speed and high amplitude settings. But turning the device too high also causes problems. Luke had jerky legs, pain in his teeth and trouble sleeping when the amplitude was too much. 

His mom knows to change the mode whenever Luke’s seizures start to cluster. It usually happens every three or four weeks.

“All you’re trying to do with those different synchronizations is trick the brain into stopping the seizures,” she said.

She doesn’t rush into mode changes because there are temporary side effects to making the switch. She waits at first to see if the seizures ease up on their own. Meanwhile, she always takes detailed notes to track Luke’s condition.

“It’s a whole lot of trial and error and a huge communication between me and the physicians,” she said of DBS. “And it’s a huge commitment for the family. It’s not just something you set and forget.”

Luke, who is homeschooled, has some cognitive delays. His mom says he’s on the level of about 7 or 8 years old. He tires quickly and has trouble with coordination of his leg muscles, so he sometimes uses a wheelchair.

With new energy thanks to DBS, Luke has been able to get out more. He likes visiting museums, playing Miracle League baseball and exploring his passion for trains. The family’s 2023 trip to Disneyland had a few hiccups, but gave them the confidence to travel again.

Ami would advise other parents to look into the therapy -- but understand that it’s a risk and an ongoing commitment. A family considering DBS would also need a strong relationship with their child’s medical team.

“You have to be really, really patient,” Ami said. “Don’t be afraid, but just go into it knowing it’s a lot of work, and it’s not curative. If it has the success that it had on Luke, it’s so worth it.”

She thanked the Cook Children’s neurology staff for never giving up on Luke.

“He amazes me every day. He is a true blessing! He is where he is today because of the great care he has received and continues to receive at Cook Children’s,” she said. “This isn’t easy, but we find joy every moment of every day.”

Dr. Keator and Dr. Marks, meanwhile, weren’t sure what to expect from DBS in an epilepsy patient. They’re both pleased with Luke’s outcome so far. And they predict that the therapy for future patients will continue to be refined as the data and research progress.  

“We have to remember to thank Luke and his family for wanting to try this,” Dr. Marks said. “We are learning as much as they are about this, and so this is definitely a journey we are taking together.”

Dr. Keator pointed out Luke’s sense of humor and cooperative spirit.

“He’s fun and full of life, and no challenge is too big,” Dr. Keator said. “He is just always up for anything that we throw at him. He’s an incredible person.”

Family Advisory Council

Cook Children’s Health Care System has almost 20 Family Advisory Councils that give input and share ideas for improvements. The councils are made up of trained volunteers, mostly moms, who advocate for patients and one another.

The Neurology Family Advisory Council went inactive a few years ago early into the COVID-19 pandemic. But Ami Waggoner’s bringing it back. Ami previously served on the Medical Family Advisory Council and now has ideas for neurology, especially in regard to staff recognition, donations and parent mentoring. Her experiences seeking epilepsy care for Luke have given her some perspectives that could benefit others at Cook Children’s, she said. 

“This isn't an easy journey,” Ami said. “What's made it easier for us is we found our community now. I feel like there's strength in numbers. And we're all here to just make it best for our families and our children.”

Natalie Dorsey, coordinator for the Parents as Partners program at Cook Children’s, said proposals from the various Family Advisory Councils have yielded new educational resources, welcome folders, open house events, newsletters and more. Volunteers must be objective, protective of confidentiality, good listeners, empathic and passionate for Cook Children’s.

Dorsey said the role of the Family Advisory Councils helps ensure that Cook Children’s continues to provide exceptional care. 

“’I feel heard, I feel respected, I feel dignified. I feel like I'm on a team here.’ Those are the things our parents say all the time,” Dorsey said. “And if we didn't have councils, I don't think we would have that same environment.”

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The Justin Institute will connect nine specialties under one roof, including Neurology, Neuropsychology, Neurosurgery, Pain Management, Physical Medicine and Rehabilitation, Psychology, Psychiatry, Developmental Pediatrics and Developmental Psychology. Find more information, including video, here.

More details here: New Institute Connects the Dots Between 9 Medical Specialties Under One Roof

The highly anticipated Jane and John Justin Institute for Mind Health will open its doors at Cook Children’s this month. The Institute brings together nine specialties that treat disorders of the nervous system, allowing kids with neurological conditions to receive the holistic care they need under one roof.  

“The concept behind the institute is that these nine specialties share not only a lot of patients, but the same working system in the care that we provide,” says the head of the Justin Institute, Scott Perry, MD. “We want to improve the patient experience and outcome by making sure we're collaborating in the care of every patient, every day, at all times.” 

The Neuro Art Collection

To prepare for the arrival of patients and their families, Dr. Perry curated a collection of awe-inspiring artwork that combines creativity with elements of neuroscience. 

“I love art very much, and it’s a great way to connect with kids,” he said.

Every artist involved in the neuro art collection has some connection to neuroscience — some are PhD neuroscientists themselves and others have disorders of the nervous system. 

“A lot of people think neuroscience and the brain are super complex,” Dr. Perry said. “We hope this art draws people in to learn a little bit more about it.” Each artwork will have a corresponding QR code that links to information about the artist, how the piece was made, and how it’s connected to neuroscience.

Featured Artists and Artworks

The very first piece in the neuro art collection was created by embroidery artist, Laura Bundeson. Dr. Perry asked her to make a custom piece out of Epilepsy Awareness T-shirts he had designed over the years, and she stitched them together into the shape of a brain. Dr. Perry also worked with Bundeson to create a custom brain pin for all Justin Institute employees to wear.  

Michele Banks, a Washington D.C.-based artist, painted watercolor brains for the collection. She infused each work with calming, nature-related designs, including rivers, trees, fields, and oceans.   

Glass artist and retired oncologist, Reneé Tegeler, created four vibrant fused glass brains. Each piece represents one of the institute’s main groups—neuroscience, child study, psychology, and psychiatry.  

Developmental neurobiologist and woodworker, Louis-Jan Pilaz, contributed several wooden animals made up of different types of brain cells.  

“We presented him with the idea of making animals out of neurons to relate to the kids we take care of, and he took it and ran with it,” Dr. Perry said.

The Institute will also feature a nine-by-fifteen foot mural by blind painter, John Bramblitt. 

“I can’t wait to see the final product because I asked him to hide things in the picture for kids to find,” Dr. Perry said. The mural will also pay homage to the recently retired founding members of the Cook Children’s neurology and neurosurgery departments. 

A Comfortable Space for Patients and Families

“When we thought about creating this space, we thought about the kinds of children that are going to be seen here,” Dr. Perry said. “Kids with behavioral developmental disorders — things like autism — and we thought, what can we do to make it a comfortable environment for them without too much sensory overload?”

Every detail of the Justin Institute has been carefully chosen to create a stimulating, yet soothing space for kids with neurological conditions and their families. Whether it’s searching for a clue on a mural or trying to guess what kind of cells a wooden animal is made of, the Institute will offer limitless ways for patients to engage with art and science in new and exciting ways.

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• It's a Colorful Life: Mural at Justin Institute Created by World-Renowned Painter who is Blind
• New Institute Connects the Dots Between 9 Medical Specialties Under One Roof

Join us for “Under the Lights,” an inspiring story about a teen with epilepsy, followed by a Q&A with the film's writer and director Miles Levin and executive producer Greg Grunberg. This event is hosted by Scott Perry, M.D., an epileptologist and head of Cook Children’s Jane and John Justin Institute for Mind Health. 

This event begins at 6 p.m. with light appetizers, followed by the film screening and virtual discussion. Registration is required to attend. Get your complimentary tickets here.

The Story

Under the Lights is the story of Sam, a boy with epilepsy, so desperate to feel like a normal kid, he goes to prom knowing that the lights will make him have a seizure. 

Cinema has historically stigmatized and ignored people with epilepsy. A demographic of 1 in 26 who have almost never been represented authentically on screen, and suffer from brutal stigma every day. Written and Directed by filmmaker with epilepsy, Miles Levin.

Learn more about "Under the Lights" here.

Story by Ashley Antle. Video by Tom Riehm.

There was a time when world-renowned painter John Bramblitt’s life was shrouded in darkness. At the age of 31, after years of gradual vision loss due to complications from epilepsy, Bramblitt lost the last of his eyesight. 

Bramblitt was 2 years old when he had his first seizure. From that point on, he spent his childhood in and out of hospitals. During his most severe seizures, Bramblitt’s heart would momentarily stop beating and he would stop breathing. As a teen, his epilepsy was further complicated by Lyme disease, which he likely contracted years before it was discovered and diagnosed.

To pass the time and cope with the many days and nights he spent in the hospital as a child, Bramblitt turned to art, an activity he has loved since as far back as he could remember. 

“I love to draw and I think I could draw before I could walk,” he said. “For some reason, in my own brain, art just makes sense. It was my way of figuring things out. It became really important because, even in the hospital, it's easy to have stuff to draw with. You can have crayons. You can have pencils. So it's easy to bring drawing stuff with you everywhere you go. And I drew every day. I took every class I could take on drawing and read every book that I could about it and different artists.”

Drawing was Bramblitt’s connection to the world outside of his hospital room. It was his escape from epilepsy and helped him process the daily health challenges he faced. 

Then, while a student at the University of North Texas, his world began to go dark. Damage to Bramblitt’s brain from years of seizures eventually took 40% of his hearing and all of his sight. Bramblitt spiraled into a deep depression, thinking the artist in him was also lost forever. 

“After my eyesight went, I didn't think I'd ever be able to draw again,” Bramblitt said. “Honestly, I was so angry and so depressed. I just didn’t feel like I had any future. I didn’t have any hope.” 

But the artistic abilities Bramblitt used to make sense of his difficult circumstances were still there and eventually resurfaced in his soul. 

The Darkness Fades 

“It took me about a year to learn how to travel independently to leave my little college apartment and travel a short distance to the university,” Bramblitt explained. “Then it occurred to me if I can cross these streets, surely I should be able to use these same techniques to cross a canvas. So I got some materials and I just started to draw.”

Instead of a pencil, Bramblitt picked up a paintbrush. He never considered himself a painter or even felt like he’d be good at it, but he knew the texture of paint would allow him to feel his work, something he couldn’t do with pencil or charcoal. 

“I thought, well, at least I could get paint and I could touch it,” he said. “So I could touch red, and I could touch blue. I still remember what colors look like.” 

Bramblitt began painting the lines and shapes of objects that he felt, and taught himself to navigate each work of art the same way he navigates the world around him — through touch. A special additive that gives paint texture allows him to customize the feel of each paint color so that he can differentiate where his paint lines begin and end.

He says his first completed drawing after becoming visually impaired was the worst work of his life, but the most proud he’s ever been of a piece. Bramblitt had no idea how far he could go with the rediscovery of his skills, but he knew he could at least get what he was seeing in his mind’s eye and feeling in his soul on paper again. 

“For the longest, I didn't think anybody would ever want to see a painting of mine,” he said. “I mean, why would they? But it was helping me.” 

It wasn’t long before Bramblitt was painting up to 16 hours a day. The more he painted the more the darkness lifted. Art was once again a way to cope, communicate and connect with the world around him, this time with more vibrancy, color and emotion than ever before. 

“That's really why I paint with realism, instead of it just being all abstract,” Bramblitt said. “I want to feel people's faces. I want to feel objects, and I want to incorporate that into the artwork so people know that I'm actually understanding the world. It gives me a way to be able to tell stories. Over the years, though, I care a little less about what people think, but I still love telling stories and I love communicating with people. So I still paint realistically, but the colors are very abstract. Colors are a wonderful way to be able to tell emotion.” 

Patience and Perseverance Pay Off

Following the encouragement of a friend, Bramblitt began entering his paintings in art shows. Initially, he did not reveal to people viewing his art that he was blind. He wanted others to see the work for what it was and not for the fact that it was created by a visually impaired individual. 

Today, Bramblitt’s art has been sold in more than 120 countries. His masterpieces and story have been featured in national and international news outlets, numerous magazine covers and even major feature films. 

But it took time, he says, and he encourages others facing similar challenges to be patient with themselves and their progress. 

“We always want everything right now, but give yourself time to work through things and don’t be afraid to fail every once in a while,” he said. “It's OK for things to not work out. If things aren't going wrong every once in a while when you're doing something, then you're probably not trying enough new things. Be easy on yourself and give yourself time.”

A Magical Mural

Bramblitt’s latest work is a 6-foot-tall by 15-foot-long mural depicting Fort Worth’s rich culture and vibrant identity. It will hang at the entrance to the new Jane and John Justin Institute for Mind Health. The piece was commissioned by Scott Perry, M.D., head of Neurosciences at the Justin Institute and self-proclaimed art enthusiast. Dr. Perry was first introduced to Bramblitt and his work at an Epilepsy Foundation Texas fundraiser. 

“As an epileptologist and art lover, I instantly connected with John, his story and his work, and initially asked him to do a project with the kids in Cook Children’s Epilepsy Monitoring Unit during Epilepsy Awareness Month,” Dr. Perry said. “When we began thinking about artwork for the Justin Institute, I wanted to feature pieces that would be more than just pictures on a wall. I wanted the artwork to be an experience for visitors, and for children and families to see hope for their own stories in these pieces, and I knew John was the perfect artist for this. Not only is his work beautiful and powerful all on its own, but his story will be an inspiration to every child that hears it and sees this painting.”

The star of the mural is a little girl surrounded by iconic Fort Worth scenes, including a calf and a singing cowboy. The bright, bold colors in one scene are balanced with the depiction of a nighttime scene that Bramblitt says includes “all kinds of wonderful, nice things.”

“For a child in the hospital, the hard times often are at night and on weekends, especially if you're in the hospital for weeks or months,” he said. “You'll have a lot of visitors sometimes during the week, but it seems like the weekends just drag on. So I wanted to have a little bit of the darkness there, but also have it pleasant and happy as a reminder that there are positive, wonderful times.”

Bramblitt’s painting is one of a number of neuro art installments at Cook Children’s. Every work within the neuro art collection was created by artists who have a connection to the neurosciences through their own personal experiences or careers.

Bramblitt hopes his mural connects with the feelings kids face when up against a health challenge, while also evoking confidence, optimism, a sense of calming reassurance and, above all else, happiness for those who pass by.

“I honestly thought my life was over whenever I lost my eyesight,” he said. “I'm still epileptic and I'm still blind, but I'm happier than I've ever been. I get to do things like this mural, and I get to travel, and I get to meet and talk to people and hear their stories. I'm just really happy.”

In recent years, robots have emerged as invaluable tools in health care by performing everything from the routine task of delivering a patient meal to assisting in highly complex surgical procedures. Their efficiency and precision can help medical professionals save time and save lives.

But a new type of robot ─ one capable of painting with artistry and expression ─ is helping patients at Cook Children’s Medical Center tap into their creativity as they navigate difficult diagnoses and circumstances. The painting robot known as Spikelangelo, or “Spike,” was first rolled out to patients on the epilepsy monitoring unit at Cook Children’s Jane and John Justin Institute for Mind Health.

Oftentimes, patients in the epilepsy monitoring unit spend up to a week in the hospital being monitored continuously for seizure activity. The time can be isolating and slow to pass.

“Creating art with the painting robot gives our patients something to take their minds off of why they are in the hospital,” said M. Scott Perry, M.D., an avid art lover, epileptologist and head of the Justin Institute. “It gives them an activity and a way to engage with something outside of their rooms.”

Therapeutic art activities are a regular part of treatment for Cook Children’s patients, especially for those struggling to express themselves as they undergo tough medical interventions.

“There’s so much research to support the multitude of benefits art offers for everyone in the health care setting, which can be unpredictable, challenging, stressful and frightening for children,” said Jill Koss, director of Family Support Services at Cook Children’s. “We use art as a way for people to explore what they’re going through, to express their feelings, and even to explore who they are because that could be changing and evolving through this process.”

Connect, Create and Collaborate

To produce a masterpiece with the help of Spike, budding artists begin by using their fingers or a stylus, just like they would a paintbrush, to create a work of art on a computer tablet in the comfort of their hospital rooms. Working remotely from its art studio near the medical center’s Child Life Zone, Spike maneuvers its brushes to mirror the artist’s strokes and paints the masterpiece onto a canvas. The studio’s clear enclosure allows hospital staff and guests to watch the robotic artist at work.

Spike’s capabilities are powered by artificial intelligence (AI) algorithms designed to meet the child artist at their level of ability, creativity and attention span. The robot can paint exactly what the creator imagines, or go a step further and provide assistance with color choice and even complete an unfinished creation based on the style and expression of the artist.

For hospitalized children in isolation, Spike can be as much a connector as it is a painter. Shared pieces designed and offered by the creative arts program will give patients the opportunity to virtually collaborate as they work individually and consecutively on the same project.

“I can see, for instance, several kids on the floor working together on a project by each adding their interpretation on how they would paint it,” Dr. Perry said. “And then Spike blending it all together into one painting.”

Patients will be able to take their masterpieces home as a reminder of their creativity, ability and resilience in the midst of challenging circumstances or use them to decorate their hospital rooms. Some may even be displayed throughout the medical center.

Fatherhood Inspires Innovation

Spike was created by artist and roboticist Pindar Van Arman after the responsibilities of fatherhood limited the time he could spend painting each day.

“When I had my children I started having more fun hanging out with my kids, changing diapers and doing stuff that parents do, and all of a sudden I was out of time,” Van Arman said. “I went from painting every day for several hours to realizing it had been a week since I painted.”

In the beginning, Van Arman programmed the robot to perform the simple yet time-consuming and tedious tasks required to prepare a canvas, mix paints, layout the proportions and paint a background. His digital art assistant worked so well that he continued to expand the machine’s capabilities, programming AI algorithms and providing feedback loops for each new idea or task.

“Every couple of months I would wonder what else I could teach it,” Van Arman said. “Like now that I have it painting could I get it to help me actually choose the pallets? Then I added a little artificial intelligence to help me with composition.”

Over the past 16 years, Van Arman has written more than two dozen algorithms to build the brain of the robot and develop it into a full-fledged digitized AI artist that can paint in the same expression and style as its creator as well as make creative decisions of its own.

“With every stroke and painting I make I’m providing feedback and training the robot, and it uses each painting as input for the future,” Van Arman said. “It’s a collaboration with myself — me being the artist and the robot imitating as much of my artistic ability as I could program into a machine. Basically, it’s a digital version of myself.”

The Future of Spikelangelo

Spikelangelo’s residency at Cook Children’s Medical Center is a collaboration between Dr. Perry and Van Arman. The two became friends after Dr. Perry purchased one of Van Arman’s paintings on eBay.

Bringing Spike to the medical campus has been several years in the making as they worked together to program, test and install a machine that meets the specific needs and attention span limitations of child artists. Van Arman made a number of customizations geared towards children, like increasing the number of colors the robot can use, developing paint formulations that don’t dry out too quickly, the addition of a paint-by-numbers feature and the ability to change the width of the paint stroke.

The robot was generously donated to Cook Children’s by Van Arman’s Creative Technology Foundation and is supported by a number of the health system’s donors. Employees at Van Arman's company, Artobotics, also volunteered their time to the project.

Spike’s pilot residency will help shape the robot’s future and Van Arman’s vision for its potential capabilities.

“Through its use at Cook Children’s, I want to find out what is fun for these kids,” Van Arman said. “I want to learn what they enjoy and tailor the robot to them. If it’s popular, I would love to expand it into other venues for children.”

Dr. Perry’s vision is to grow its therapeutic use throughout the medical center and is particularly excited about the possibility of adding voice command for children with cognitive impairments and neuromuscular disabilities. He hopes Spike will one day connect children in hospitals all over the country.

In the meantime, Spike will create, entertain and brighten the days of young artists who visit him in Fort Worth.

Today, Cook Children’s Medical Center - Prosper launched a new testing and diagnostic service that allows children experiencing seizures to receive care closer to their homes and communities. The test, called continuous electroencephalogram (EEG) monitoring, reads electrical activity in the brain and is an essential tool for detecting and diagnosing a seizure disorder. 

Prosper resident and father of two, Kevin Greene knows all too well the challenges of having to leave your community to seek medical care and how that impacts a family. In February, the vice president and administrator at Cook Children’s – Prosper, Greene and his wife Christy, took their 9-month-old son Matthew to the emergency department at Cook Children’s Medical Center in Fort Worth after he experienced what appeared to be a seizure episode at their home.

The Greenes began to notice symptoms in Matthew a couple of weeks prior to the event and consulted with Damian Campbell, D.O., a Prosper-based pediatric neurologist and member of Cook Children’s Physician Network.

“We took Matthew to see Dr. Campbell, who is amazing, and we were watching his condition closely, but following this episode he encouraged us to go to our medical center in Fort Worth for further evaluation,” Greene said. “Our medical center in Prosper was open, but I knew we did not offer continuous EEG monitoring at the time and would not be able to provide the appropriate services to be able to monitor and capture what was happening. Upon arriving in Fort Worth, Matthew was examined in the emergency department where he was ultimately admitted to our epilepsy monitoring unit.”

The new EEG monitoring service at Cook Children’s – Prosper is made possible through collaboration with the Neurosciences team in Fort Worth, an effort that began months before Greene and his family had their own emergency.

Patients experiencing a potential seizure are admitted to the inpatient unit at Cook Children’s – Prosper where an EEG technician sets up mobile monitoring equipment and attaches monitoring electrodes to the patient’s scalp. The test livestreams to clinicians in the Epilepsy Monitoring Unit at Cook Children’s Medical Center in Fort Worth for observation and reading. The monitoring process typically takes at least 24 hours and requires an overnight stay in the hospital.

“This is a relationship that we've been working on for multiple months with the Jane and John Justin Institute for Mind Health team in Fort Worth led by M. Scott Perry, M.D., head of Neurosciences and Cynthia Keator, M.D., Medical Director of Neurology,” Greene said. “It is another great example of how the children and families we care for at Cook Children’s – Prosper will have the full weight and expertise of the entire health care system behind them.”

Several obstacles were overcome to make this remote monitoring service a reality, including building the technological infrastructure to support high-speed and secure data-sharing channels between the two medical centers for real-time monitoring of the patient’s EEG patterns and events.

“We’ve been fortunate to have the support of our main campus while we grow and bring various systems online,” said neurologist Damian Campbell, D.O. of Cook Children’s – Prosper. “Their support has offered us an opportunity to really plan out our own approach here in Prosper. We’re excited to now be able to provide continuous EEG monitoring to our community; another step forward toward our promise of delivering the highest quality care to every child in our care and communities.”

Communication and collaboration protocols between the monitoring team in Fort Worth and clinical team members in Prosper were established to coordinate care activities, share essential information and maintain seamless operations during the monitoring process. 

“The project's success can be attributed to the dedication, expertise, and commitment of professionals from Cook Children's in Prosper and Fort Worth working together to achieve a common goal of providing the best possible care for patients,” said Rickey Ross, manager of the Neurodiagnostics Lab at Cook Children’s – Fort Worth. “Not only does this enhance access to specialized care and more timely interventions for kids in Prosper and the surrounding communities, but it offers convenience and comfort for patients and families, promotes knowledge sharing and optimizes resource utilization, all of which ultimately improve patient outcomes and well-being.”

Monitoring technicians in Fort Worth and nurses in Prosper underwent comprehensive training and education to prepare to support the service. 

“Our nurses and clinical care team members at Cook Children’s – Prosper are excited to be able to care for patient’s needing this critical service,” said Sheralyn Hartline, RN, assistant vice president of nursing and patient care at Cook Children’s – Prosper. “Through the collaboration with our medical team in Fort Worth, we are forever changing the way families are able to access world-class pediatric neurological services close to home.”

“Our family is truly grateful for the amazing care and kindness that was provided to our son during our time in Fort Worth,” Greene said. “It brings me great joy knowing we are now able to extend the same high-quality care and experience to our families seeking care at Cook Children’s Medical Center – Prosper.”

Best Children’s Hospitals list for 2023-2024.

The report, which was released today, uses clinical data to measure patient safety, infection prevention and adequacy of nurse staffing. Out of 284 children’s hospitals in the U.S., only 90 ranked in at least one of the 10 pediatric specialties evaluated. The following Cook Children’s specialties were named among the top programs:

• Pediatric Cancer - #30 in the nation
• Pediatric Diabetes and Endocrinology - #31 in the nation
• Pediatric Neurology and Neurosurgery - #36 in the nation
• Pediatric Orthopedics - #40 in the nation
• Pediatric Pulmonology and Lung Surgery - #48 in the nation

Cook Children's Hematology and Oncology program jumped an impressive 20 spots in the rankings, from #50 in 2022-2023 to #30 in 2023-2024.

 “We are focused every day to improve the lives of the patients we serve and enrich the care of children all over the world. We do this by providing innovative care and contributing to the science of future cancer therapies,” said Donald Beam, M.D., medical director of Hematology and Oncology. “We will continue to strive to improve every day, growing beyond what we are and stepping to the future.”

For Cook Children's Health Care System as a whole, the rankings demonstrate a longstanding commitment to excellence in pediatric care.  

"For more than 105 years, Cook Children's has been committed to improving the well-being of every child in our care. We are honored to see our mission validated yet again by U.S. News and World Report,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “With our newest medical center in Prosper now open, we look forward to making an impact in the lives of even more children and families.” 

Cook Children’s also ranked #3 in Texas and #4 in the Southwest on the U.S. News and World Report “Best Regional Hospitals” list. 

Sometimes a mother’s intuition can be the difference between life and death. That was true for 7-year-old Ismael Aguilera whose episodes of debilitating headaches turned out to be a life-threatening condition. Ismael’s mom, Karla, questioned the doctor every time she was told he had migraines.

“I knew it was not normal for him to be feeling like that every few weeks,” Karla said.

Ismael went through eight months of episodes including unsteady walking, vomiting, dizziness, sweating, slurred speech and blurry vision. A couple of trips to the local Emergency Department also left Karla and her husband Isack with more questions than answers. Last July, Ismael had another episode, but this time one side of his face drooped down and one side of his body tingled. They once again rushed Ismael to the Emergency Department and pushed for answers. 

Worsening Condition

Ismael’s condition worsened as his mental status rapidly declined and he experienced weakness on his left side. Doctors in their local Emergency Department contacted Cook Children’s and the Teddy Bear Transport team acted fast. Once in the Intensive Care Unit at Cook Children’s, the team intubated Ismael and quickly began testing which revealed he was in a dire situation. Karla remembers hearing the doctors tell her the severity and urgency of Ismael’s condition, but she was in shock and not able to process everything.

“Even though I couldn’t think through it all, I had this feeling that he was going to be fine, and he would leave the hospital walking,” Karla said. “My faith in God got me through.”

They told her that during these episodes he was having smaller strokes but this one was in a different area affecting the basilar artery which can be fatal if not treated immediately. The area included the brainstem which coordinates breathing and maintains alertness. Only an extremely skilled physician can treat this successfully. 

Right Place, Right Team, Right Time

Marcela Torres, M.D., Cook Children’s Hematology and Oncology - Stroke and Thrombosis Program co-director, began treating Ismael with blood thinners to prevent more strokes. She had to strike a delicate balance with the medications – not enough could cause more strokes but too much could cause him to bleed into the vital area of his brain. 

“It is very possible he only had a matter of hours before we would not have been able to save him,” Dr. Torres said. “I remember watching the images of Ismael’s MRI in real time and texting Dr. Gerstle because I knew we needed him right away.”

Ronald Gerstle, M.D., pediatric interventional radiologist at Cook Children’s Medical Center, performed a thrombectomy which came with many risks but was the only chance at saving Ismael’s life. He very carefully removed the clot through a tiny catheter that went from Ismael’s leg to his brain.

“It takes an experienced stroke center with all the resources to perform these procedures in kids this young and in a timely manner so we can save their brains,” said Richard Roberts, M.D., pediatric neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center.

After the procedure, the team anxiously waited for Ismael to show signs of progress.

“There was a chance Ismael wouldn’t wake up after the procedure,” said Rachelle Herring, M.D., one of Cook Children’s pediatric stroke neurologists who treated Ismael in the ICU. “We were all surprised and thankful to watch him slowly wake up and then talk, move and regain function.”

A Miracle in the Making

After five days, Ismael was extubated. Drs. Herring and Torres checked on him frequently to monitor his neurologic status and assess his level of recovery. Ismael continued to improve at a faster pace than anyone expected. He spent one month in rehab learning to walk and eat again – all while wearing a cervical collar since the doctors suspected his strokes were caused by bow hunter’s syndrome. With this condition, turning the neck compresses the artery and causes strokes.

Two months later, Dr. Gerstle performed an angiogram to confirm the diagnosis. Sure enough, every time he turned Ismael’s neck during the procedure, it began to compress the artery.

Road to Recovery

In January, Dr. Roberts performed a rare procedure fusing Ismael’s head and neck to prevent further strokes. Dr. Roberts placed screws in the cervical vertebrae and a head plate on the base of his skull – operating in an area that was one millimeter away from the artery running through Ismael’s neck.

Since then, Ismael has continued to recover well without any vascular events. In April, he was cleared to remove the cervical collar and continues to follow up with Dr. Roberts and Fernando Acosta Jr., M.D., Stroke and Thrombosis Program co-director.

“He now has an excellent prognosis with a low risk of more strokes,” Dr. Herring said. “His recovery has been miraculous considering where the major stroke was located. We are all so amazed.”

‘Thank God They Knew What to do’

“We needed to be at Cook Children’s all along,” Karla said. “Everyone from child life specialist Madi Mayfield who Ismael called his best friend to nurse Tyler Adair who went out of his way to make him happy with special handshakes and talking about his favorite things to the amazing doctors who got Ismael to where he is today. Thank God they knew what to do.”

Because of the fusion, Ismael will not be able to participate in impact sports or jump on trampolines or bounce houses. This could pose a significant risk of extension or hyperextension of the neck and potentially break the hardware or his bone putting Ismael at risk for strokes again.

But other than that, Karla says he is back to being a normal kid who loves animals, riding horses, playing outside and watching the Steelers play football.

“Ismael has such a caring heart,” Karla said. “I really think God put him on this journey to help others. He has a purpose here.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

The most important thing to know is that strokes happen in children. If something is different or off about your child, seek emergency care.

generation and propagation of epilepsy activity in the context of this disorder as a network disease.  

His findings may help physicians to understand how epilepsy activity initiates in a focal brain area of children with epilepsy propagating later in other areas of the brain. Pinpointing these onset areas, where epilepsy starts, would allow stopping seizures through surgery in children suffering from epilepsy without resecting large brain areas, which may damage physiological brain functions such as the language or movements.

Pediatric epilepsy is a neurological disorder, characterized by recurrent seizures due to abnormal electrical brain activity. It has been estimated that 4-10 out of 100 children suffer from epilepsy. A significant proportion of these children are unable to control their seizures with drugs dealing with recurrent uncontrolled seizures. These seizures may have a severe impact on the quality of child’s life leading to serious cognitive and behavioral problems as well as increased mortality. Therefore, it is critical to develop new strategies for the diagnosis and treatment of uncontrolled seizures in children with epilepsy.

Children with uncontrolled seizures undergoing surgery often require the placement of electrodes inside their brain for identifying the area where seizures are generated. Yet, seizures occur spontaneously and propagate fast from onset areas to areas of spread. Thus, we should have to wait for a seizure to occur and this may take several days. This increases the patient’s time in the hospital and thus the risk of infection from invasive electrodes placed in the patient’s brain. 

In this study, Cook Children’s Neuroscience Research team showed that they can map the onset of this propagating activity without having to wait for a seizure to occur. Such a development can shorten the patient’s stay in the hospital improving the presurgical evaluation procedure.

This study is funded by the National Institute of Neurological Disorders and Stroke and is in collaboration with the University Campus Bio Medico in Rome, Italy, the Boston Children’s Hospital, and Harvard Medical School. Margherita Matarrese, a Ph.D. student of Bioengineering under the supervision of Professor Papadelis serves as first author of this scientific paper.

Coming Soon

The Jane and John Justin Institute for Mind Health at Cook Children’s, opening in October 2023, is bringing together nine specialties under one roof. Pediatric specialists in neurological, developmental and behavioral health are changing the way we deliver health care. Together, we’re healing minds and bodies and sharing smiles that warm the soul and connecting care for kids unlike anyone else.

To many parents and their children, M. Scott Perry, M.D., head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, is best known as an epileptologist. One who isn’t afraid to take on rare and difficult childhood epilepsies. An active clinical researcher, always searching for therapies to treat and cure epilepsy. A relentless advocate for his patients.

But his more than 8,000 Twitter followers know him as @TheNotoriousEEG, and follow him for his take on everything from epilepsy research to food, music and art. Despite his healthy following, Dr. Perry was initially reluctant to join the Twitterverse.

“At some point, people within the hospital asked me if I would consider joining social media, and my immediate answer was, ‘No, thank you,’ because I have a lot of stuff to do, and I don't need to add another activity to my life,” Dr. Perry said. “But they seemed to think I would be good at it. So I decided if I could come up with a handle that was clever enough, then I will do it.”

Dr. Perry elicited naming ideas through a contest with his colleagues in the neuroscience department but none of the suggestions felt right. Then, it came to him: @TheNotoriousEEG, a play on his love for 90’s rap music and his favorite artist, The Notorious B.I.G., coupled with a nod to his work with the acronym of a common neurologic test called an electroencephalogram (EEG).

Dr. Perry’s Twitter feed is as diverse as his interests. Yes, you’ll find a lot of posts about epilepsy awareness and medical research, but you’ll also see pictures of the nightly meals he cooks for his family, his weekend cheer dad persona as he follows his youngest daughter to cheer competitions and his support of Texas Christian University where his oldest daughter is studying to be a nurse. Scroll a little more and you’ll pick up on his love for art, something he gets from his antique-loving mother with an eye for beautiful things.

His initial reluctancy to tweet has given way to cautious appreciation, and he’s proven himself a natural at harnessing the power of social media for good.

“Despite all of Twitter's problems, I think that it's a good platform for scientists, frankly, to share information very quickly,” he said. “It's a great way to connect with patients and other advocates quickly and to bring them information that maybe they don't have available to them or to gain knowledge from others that you didn’t have access to. It's a way to share expertise widely with people that might not have access to some of those things all the time. Beyond that, it's a good way to show people that doctors have lives and personalities and, to some degree, we are regular people, too.”

The Doctor from the Delta

Dr.  Perry’s road to becoming a world-class pediatric epileptologist began in the Mississippi Delta where he was born and raised in the small town of Cleveland, Mississippi — home to the Delta State Fighting Okra! His father owned and operated a used car company and his extended family operated lots throughout Mississippi. The family business is still in operation today with his two older siblings at the helm.

As a kid, Dr. Perry had his sights set on an occupation that would take him far beyond Mississippi into parts unknown. He wanted to conquer space exploration as an astronaut. But, during a stint at Space Camp, Dr. Perry was told his vision was not perfect and he would never be able to command a space shuttle. 

“If you know my personality, my goal is to be the commander,” Dr. Perry said. “So I had to step out of the astronaut business and try to look at something else. Being a doctor sounded challenging.”

During his junior and senior year of high school, Dr. Perry attended the Mississippi School for Mathematics and Science, followed by Emory University in Georgia for his undergraduate degree in physics. That’s also where he met his wife of 22 years, Becky.

Dr. Perry went back to his home state to earn his medical degree at the University of Mississippi School of Medicine. It was there that a neuroanatomy class stoked his desire to specialize in neurology. He said that, for him, the subject matter “just clicked.”

Following medical school, Dr. Perry returned to Emory University for his pediatrics and child neurology residencies. In 2008, he joined Nicklaus Children’s Hospital in Miami, Florida, to pursue a neurophysiology fellowship. 

Westbound to Cowtown

When his training was complete, Dr. Perry longed for a place to practice medicine free from the bureaucracy that came with medical facilities attached to teaching institutions. It just so happened that he came across an advertisement for Cook Children’s. He had never heard of the place but was impressed that the medical center had an epilepsy monitoring unit and was performing a healthy amount of epilepsy surgeries, which is where his interest lay.

“It just sounded like a decent opportunity, so I decided I'd come and give it a shot and see who these people were,” Dr. Perry said. “I came and interviewed here and I really loved the concept of what they were doing, and how these were essentially private practice neurologists. They were doing things that you would typically only see being done in an academic medical institution, but they were doing it here in a private children's hospital. This kind of pioneering spirit they had was really impressive to me.”

Thirteen years later, Dr. Perry has blazed a trail at Cook Children's as an expert in rare genetic epilepsies and epilepsy surgery.

“I find both of those things incredibly rewarding because I love to tackle very difficult cases and break them down, hopefully, to determine either where the seizures are coming from or why the seizures are occurring,” he said.

He’s admittedly the type of person that does not deal well with incremental change. It's either go big or go home. That’s why Dr. Perry loves epilepsy surgery. When a patient comes out of an operation seizure-free or with significantly reduced seizure activity for the first time in their lives, it’s an immediate payoff.

When an operation can’t cure a condition, like in the case of many genetic epilepsies, it is his patients and their families that keep him going. The tenacity of the families that deal with these conditions, and the relentless drive to help their children through advocacy, forming their own non-profits, and funding the research necessary to find cures, is all the inspiration he requires to do his job daily. Dr. Perry says that, thanks in large part to their efforts, we see the advent of new therapies and the potential of disease-modifying treatments to correct the underlying genetic cause of these rare conditions.

Collaborating for Mind Health

In addition to his patient load, Dr. Perry is overseeing the transformation of Cook Children’s divisions of neurosciences with the development of a unique and comprehensive care model for children with diseases of the nervous system. It’s known as The Jane and John Justin Institute for Mind Health at Cook Children’s. Nine specialties that commonly overlap in the treatment of nervous system disorders, and have traditionally been siloed in separate locations, are coming together under one roof to make care easier and more efficient for patients and families. The Justin Institute will also open the door of collaboration between physicians and other providers when it comes to shared patients.

“I'm excited about the potential convenience for families to be able to get everything done in one fail swoop. To park your car once, and to miss one day of work, and to get out of school one day and get everything you need,” Dr. Perry said. “Then on the backside, knowing that your doctors are all down the hallway from each other and can be face-to-face about your care and make sure everybody's on the same page.”

Dr. Perry has personally curated much of the neuro-focused art that will hang in the hallways of the Justin Institute, housed in the newly expanded Dodson Specialty Clinics building at Cook Children’s Medical Center. The pieces range from paintings of Fort Worth’s skyline to images of the brain made from glass. All of the art installations were created by artists with a connection to the neurosciences in an effort to make the topic of brain science more approachable.

“I'm very excited about the building because I have spent a lot of time obsessing about how it’s going to look and how it's going to work,” he said. “It'll be our version of Disney for neuroscience. A place you look forward to coming to for the care of your child.”

Getting the Justin Institute up and running hasn’t been easy, but for someone who wants the best possible care experience for patients, it’s been worth it. He says bringing this many specialties together in order to attain a collaborative network encourages change across all nine divisions. It has required a lot of listening and learning on his part in order to understand how specialties outside of his, like behavioral health or developmental pediatrics, run their clinics so that they can build a care model that is good for patients and providers.

Collaboration within the Justin Institute will also expand neuroscience research opportunities into behavioral health, developmental psychology, autism and other disorders associated with the nervous system.

Even though Cook Children’s is not a traditional academic medical center affiliated with a teaching institution where research is a cornerstone of the programming, the medical center has a robust research arm. It’s one of the things that attracted Dr. Perry to the health care system.

“We're the most academic, non-academic place in the country, in my opinion,” Dr. Perry said. “I think the way we're doing it is unique and offers more opportunity for access to patients for enrollment. I like to think it's a bit healthier research environment because the Dodson Neurosciences Research Endowment is there to cover the salaries of the research employees regardless of grant funding. And then, because we're not tied to any one institution, it allows us to collaborate with numerous institutions and have multiple partners.”

Dr. Perry was instrumental in launching the Dodson Neurosciences Research Endowment at Cook Children’s, which he says is a game changer in taking the medical center, already renowned for its clinical care, to one also recognized for ground-breaking research. It’s one of his proudest accomplishments so far.

Even with all of these big medical career moments, Dr. Perry has not forgotten his Mississippi Delta roots. Look no further than his Twitter feed for proof. Shrimp and grits, po-boys and gumbo — all home-cooked by one of the nation’s leading epileptologists, aka @TheNotoriousEEG.

“I'm just a simple man from Mississippi,” Dr. Perry said. “I just happen to be pretty decent at epilepsy.”

Sunday, March 26, 2023 is Epilepsy Awareness Day to spotlight this neurological condition that affects nearly 50 million people worldwide. People are encouraged to wear purple. 

By Ashley Antle

There was a time when constant seizures plagued 4-year-old Sofia Gutierrez-Lopez’s life. They started when she was 19 months old and gradually the seizures occurred hundreds of times within 24 hours. Day and night, Sofia’s brain misfired, stealing her ability to hit developmental milestones and live a normal life.

No amount or combination of seizure medication helped, which is common with Sofia’s type of epilepsy. Sofia has a severe malformation of the left side of her brain, and that’s where her seizures originated. Her parents were desperate for something — anything — that would free their daughter from the unrelenting seizures and allow her to have as normal a childhood as possible.

In April 2022, Sofia underwent surgery at Cook Children’s. Now a year later, her seizure activity is dramatically reduced and her quality of life dramatically improved. Since surgery, Sofia had one day where she experienced three seizures, compared to hundreds every day before surgery.

M. Scott Perry, M.D., an epileptologist and head of neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, was one of several doctors treating Sofia. He recommended a functional hemispherectomy — a surgery that removes or disconnects half of the brain to interrupt the seizures and stop their assault on the healthy side of the brain. In Sofia’s case, it would be the left side.

Like any surgery, it had its risks, but so did living with a brain under constant attack. Sofia already had developmental delays, and every seizure increased the potential for more. Eventually, the seizures could rob her of the ability to walk, talk and eat. Children with uncontrolled seizures also are at greater risk for sudden death during a seizure.

“In this case, the risk of surgery is weighed against the risk of her continuing to have seizures,” explained Daniel Hansen, M.D., a pediatric neurosurgeon specializing in epilepsy surgery and medical director of neuro-trauma at Cook Children’s Medical Center. “The reality is epilepsy surgery is really quite safe when done by a trained epilepsy surgeon or a pediatric neurosurgeon with epilepsy experience.

“The risk of catastrophic operative complications or unexpected postoperative complications is very low,” Hansen said. “Even knowing that there will likely be permanent changes to strength and vision on the opposite side of the body that are unavoidable, the trade-off to being seizure free is, for most children, completely worth it.”

Fateful Connection on Trip

Even so, having a portion of their child’s brain disconnected was a scary thought for Sofia’s parents.

“It's crazy to think that they could actually go in her brain, take part of her brain out and that is going to help her,” said Cristina Gutierrez-Lopez, Sofia’s mother. “It sounded like fiction.”

Sofia’s parents weren’t quite ready for that step until a trip to Mexico to visit family brought a turn of events that not only confirmed the surgery was necessary, but that Cook Children’s was the right place with the right doctors to have it done. While in Mexico, Sofia suffered a seizure emergency that sent her to the emergency department of a local hospital. A physician there seconded the diagnosis of Cook Children’s neurologists and explained that surgery was the only option for any relief.

Without knowing the family’s already established ties to Cook Children’s, the physician told them about a neurologist he knew in Texas to be one of the best in epilepsy treatment. He attended a presentation made by this Texas doctor at a medical conference. That Texas physician turned out to be Dr. Perry. The same Dr. Perry that Sofia had seen as a patient before her fateful trip to Mexico.

Sofia’s parents were stunned at the connection. Her mother said it was confirmation that God had orchestrated these events to bring them to a place of certainty and peace and that surgery was the right next step for Sofia.

When they returned to Fort Worth, the family met again with Dr. Perry and discussed the hemispherectomy. He introduced them to Dr. Hansen who would perform the procedure. Gutierrez-Lopez told the medical team they were ready.

“I am clear on all the risks,” she said. “I understand that this is the only thing that can possibly help my daughter.”

“When we went home from the hospital, I took home the same Sofia I brought to the hospital, but improved,” Gutierrez-Lopez said. “She had the same communication skills and the same physical ability. Everything was the same or better, plus no seizures.”

As complicated and risky as epilepsy surgery sounds, outcomes like Sofia’s are actually common.

“Sophia's case and her outcome is nothing short of astounding,” Dr. Hansen said. “I mean, we go from a girl who had literally hundreds of seizures a day to almost seizure-free. But although that outcome is amazing and astounding, it is the expected outcome. This is not a one-off sort of thing for children with epilepsy.”

Breaking Cultural Barriers

A perception that the brain is too complex to fix and, therefore, should not be touched is a common misconception, especially among minority groups, according to both Dr. Perry and Dr. Hansen. Dr. Perry is studying the disparities that exist within epilepsy treatment and, in particular, surgery. Many of those disparities are already well documented but a lot of cases use insurance databases to illustrate the fact that more white people have epilepsy surgery than non-white people, according to Dr. Perry. The problem with this approach, he says, is that it only looks at those who underwent surgery and not at those who were offered but declined.

“We say there's a disparity, which is true, but we don't know why there's a disparity,” Dr. Perry said. “Was it because they weren't offered the opportunity because maybe their insurance is not as good? Or their social situation isn't as good, or they were offered but declined for whatever reason?”

Dr. Perry’s study, which now has a database of more than 2,000 patients, examines the cases of those referred for epilepsy surgery and any differences between the work-up of each case. For example, do people of color have fewer medical tests and therefore are not revealed to be good candidates?

“It turns out that the work-ups are not really different based on race or ethnicity,” Dr. Perry said. “However, based on the data we’ve collected so far, people of color are almost four times more likely to decline the opportunity for surgery when offered.”

The question now becomes, why?  

“Insurance as a primary factor is not the whole story,” Dr. Perry said. “I think that's one limitation, but another limitation is there are cultural barriers to getting epilepsy surgery, and if we don't understand those barriers, then getting everybody the best insurance is not going to fix the problem. There's an aversion to this treatment approach and that's something we need to explore a little further because we need to learn what their concerns are so that we can address those barriers and make sure this opportunity is available to everybody.”

Tracy Vang, director of equity and inclusion at Cook Children’s, agrees. She cited the book “The Spirit Catches You and You Fall Down” by Anne Fadiman as an example of how cultural beliefs intersect with medicine when it comes to how some perceive illness, what causes it, and how it should be treated.

That’s why Gutierrez-Lopez shares her daughter’s story. 

She wants other parents, particularly those who share her Latino heritage, to know that while these are hard decisions to make, parents should consider the possibilities for their child over their own fear or perceptions of surgery.

“Fantasy” is the word she used to describe her initial impression of epilepsy surgery. After much of her own research, putting her faith in action, and trusting the capability of Sofia’s doctors, she pushed past her disbelief and fear. 

“As a mother, you never want to expose yourself to losing your children or anything bad happening to them, but when you have special needs children, the pain of seeing them suffer teaches you to be strong enough to take risks when you know there is hope for a better quality of life for them,” Lopez-Rosas said. “We trust in God Almighty and in the wisdom he has given to the doctors and put our little ones in their hands. They would never suggest surgery if they did not know that there is a great chance of success.”

We’re born with a mind, body and soul. When something goes wrong with one, it often affects another. That’s especially true for individuals with diseases of the nervous system — or the brain, spinal cord and nerves — and it’s the motivation for the development of the new Jane and John Justin Institute for Mind Health at Cook Children’s Medical Center – Fort Worth.

The Justin Institute will connect nine specialties under one roof, including Neurology, Neuropsychology, Neurosurgery, Pain Management, Physical Medicine and Rehabilitation, Psychology, Psychiatry, Developmental Pediatrics and Developmental Psychology. It is slated to open fall 2023 in Cook Children’s newly expanded Dodson Specialty Clinics building.

"All of the departments and specialties involved in creating the Justin Institute have worked really hard to break out of their silos and build a system that gives our patients a connected and well-coordinated experience," said Teresa Baker, assistant vice president, Primary and Specialty Services, for Cook Children's Physician Network. "I'm really thankful for their teamwork and focus on doing what is best for the child, and our patient families will be, too, as they see it first hand during their visits."

Physicians began building the Justin Institute’s framework several years ago after identifying a missing link within the Neurosciences program. There was little coordination among overlapping specialties that treat the mental, developmental and physical diseases and disorders associated with the nervous system.

“A majority of people with diseases of the nervous system have accompanying mental health or behavioral health disorders,” said M. Scott Perry, M.D., an epileptologist and head of Neurosciences at the Justin Institute. “For example, about 50% of people with epilepsy will also have mental health disorders such as depression and anxiety.”

That may be because epilepsy, depression and anxiety share the same abnormal brain connections, or because the stress of living with the unpredictability of the disorder leads to mental health struggles. Either way, it’s important to connect the dots of care for those with overlapping mental, intellectual, neurological and developmental health needs.

“Kids get better when all aspects of their health and wellbeing are addressed, including their medical and mental health needs,” said Kristen Pyrc, M.D., Cook Children’s co-medical director of Psychiatry. “Many of our patients are seen by Neurology and Developmental Pediatrics and Developmental Psychology specialties, so we are hoping that being part of one institute will help increase collaboration amongst the disciplines and get patients to the appropriate resources more quickly.”

Everything for the Child

The Justin Institute is built around a patient-centered experience, where everything for the care of a child’s nervous system is in one place and coordinated through one referral, assessment and intake process. It’s designed to eliminate barriers to care like multiple appointments with multiple providers in multiple locations and to simplify the patient’s access to their medical team. For children and their families, it will make a day of doctor’s appointments much easier. For medical providers, it enhances their ability to coordinate care.

“The Justin Institute will help us more readily identify and align services earlier in the treatment process and steer families in the right direction, or in many directions simultaneously,” said Lena Zettler, MA, LPA, director of the Cook Children’s Department of Psychology. “For our patients who have had traumatic childhood experiences, plus mental health issues and neurodevelopmental disorders such as ADHD, this will provide better collaboration and coordination of care, hopefully in a more timely manner.”

It’s about improving the system, Dr. Perry explained. One that can admittedly be hard for families to navigate at times.

“Dealing with a disorder of the nervous system is stressful enough,” he said. “Getting the appropriate care should not make it worse. You shouldn’t have to pack up your child and go to four different places when you need a neurologist, neurosurgeon, psychologist and autism services when we can bring these services that commonly co-mingle together under one umbrella.”

At the Justin Institute, neurologists, neurosurgeons, psychiatrists, psychologists and experts in developmental and behavioral health will work together in one location where walking across the hall to consult with one another on a patient’s case will be the norm. For the patient, that translates to better, more comprehensive and connected care.

“The opportunities for collaboration between specialty departments when they are under one roof has the potential to really enhance the care that we all provide our families,” said Matt Robison, director of Cook Children’s Child Study Center, where kids with complex developmental and behavioral health disorders receive diagnosis, treatment and education.

Child Study Center’s Developmental Pediatrics department and Psychology program will physically relocate to the Dodson Specialty Clinics building as part of the Justin Institute, as well as Cook Children’s psychologists who currently function in different departments on the main hospital campus.

The move undoubtedly brings mental health care front and center and illustrates Cook Children’s commitment to connected care, according to Zettler.

“Cook Children’s understands there is no health without mental health,” she said. “Psychologists, in particular, have much to offer in assessment and complex diagnostics, and I am looking forward to future collaboration, projects and research that will be mutually beneficial for all.”

Cook Children’s already has a robust Neurosciences Research Program, but the Justin Institute will open the door for more cross-specialty studies, much like one currently underway examining the impact of epilepsy on the psychological health of children. Chrystal Cooper, Ph.D., a principal investigator with the Justin Institute, is leading that study.

“Dr. Cooper’s work is an example of the type of collaborative research that is possible across the divisions of the Justin Institute,” Dr. Perry said. “Our plan is to take the successful research program we have in neurosciences with a focus on epilepsy, cerebral palsy and movement and grow that team to include teams dedicated to autism, pain, stroke and more.”

To learn more about the specialties represented at the Justin Institute for Mind Health, visit Instituteformindhealth.org. 

March 28, 2022, was coming to a close like any other ordinary day for the Chavez-Llanas family. Salvador and Laura Chavez-Llanas were upstairs bathing their youngest of three sons while their older two were playing video games downstairs. In a moment, their peaceful evening turned to chaos.

A cry for help rang out from downstairs. It came from Salvador and Laura’s middle son. Laura rushed to check on him, only to find her oldest, 8-year-old Santiago, on the floor. He was conscious but drooling, and unable to stand up or move the right side of his body. His speech was slurred, and one side of his face drooped.

Laura yelled for her husband’s help. He called 911, and an ambulance arrived within minutes to carry Santiago to the emergency room at Cook Children’s Medical Center. That’s where Laura met Rachelle Herring, M.D., a pediatric neurologist.

“Santiago was pretty severely impaired at that point,” Dr. Herring explained. “He had a dense hemiplegia, which means he really could not move the right side of his body at all. He had very slurred speech but, fortunately, he was alert and understood everything that was going on.”

Santiago quickly underwent imaging tests of his brain. They confirmed he was having an ischemic stroke. This type of stroke occurs when a blood clot blocks the flow of blood in a vessel in the brain, cutting off oxygen and disrupting the function controlled by that part of the brain.

“We were just playing our Nintendo Switch and that's when my controller fell," Santiago said. "I started reaching for it, but then I felt like I was getting weak in my right side so I tried even harder to get it and then I fell down.”

Santi, as his mother calls him, has always been a healthy, active boy who loves playing basketball, swimming and riding bikes with his family. Never did his parents imagine their son would be one of the 5 in 100,000 kids each year ages 1 to 18 to have an ischemic stroke. It’s more common in newborns, occurring in 1 in 2,500 full-term infants during their first month of life.

“It was pretty shocking,” Laura said. “Your world as you know it just disappears. It’s so hard.”

Time was of the essence. With stroke, recovery is directly related to how quickly treatment can be administered. But stroke in children is so rare that the drug considered the gold standard treatment for adults has not been studied enough in kids to be approved for use in pediatric cases.

The medication, called tissue plasminogen activator, or tPA, breaks up blood clots. It’s administered through an IV with the goal of dissolving the clot within the vessel and restoring as much blood flow as possible. To be most effective in reversing damage, it must be administered within 4 ½ hours of the onset of stroke.

Although it’s considered off-label to use tPA to treat children, some hospitals administer the drug to pediatric patients after carefully weighing the risks and benefits.

“That’s what we did in the case of Santiago,” Dr. Herring said. “He came in very quickly after the stroke and I reached out to Dr. Marcela Torres, our hematologist who specializes in blood clots, about giving tPA. We’re basing our decision on the adult data that when the patient comes in within 4 ½ hours of an ischemic stroke, we think tPA can help restore the blood flow to the affected area of their brain."

Dr. Herring explained the risks of using the powerful drug to Santiago’s mom.

“At that point, I couldn’t say no,” Laura said. “Because I want to have my kid with me.”

It was the right call. Not long after receiving the drug Santiago’s symptoms began to resolve, and he was transferred from the ER to the pediatric ICU for monitoring. Because tPA is a blood thinner, patients are at risk of bleeding and must be watched closely. The stroke team also wanted to keep an eye on his neurological status and run tests to determine the cause of the stroke. 

Images of Santiago’s brain showed inflammation of the blood vessels consistent with a condition called cerebral vasculitis.

“We don't know exactly what caused the vasculitis,” Dr. Herring said. “It could have been triggered by some type of prior infection. The body's immune system goes a little haywire and can cause irritation to the blood vessels in the brain.”

Santiago spent two weeks in the hospital, all the while making a remarkable recovery. By the time he was discharged he had only a mild facial droop and had regained all of his movement. He’s on medications to reduce inflammation in his blood vessels, as well as blood thinner to prevent more strokes, and will undergo more imaging tests in the future to make sure his vessels return to normal.

In the meantime, Santiago is enjoying being back home with his family and back to school part time.

Looking back, Laura recalls a few things her son told her that may have signaled something was wrong. A few days before the stroke, Santiago complained of not feeling well. He said he felt like he was going to pass out at school. When questioned in detail by his mother, the only word he could find to describe how he felt was “weird.” Now, Laura wants parents to know to listen to their kids and know the signs and symptoms of stroke.

“Look at your kids,” she said. “Look at how they're behaving, and if they tell you something hurts, pay attention to every single different thing.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

“The most important thing to know is that stroke happens in children,” Dr. Herring said. “If something is different or off about your kid, do not discount it. It could be something serious. Seek emergency care because even if they're not a candidate for tPA, sometimes they're a candidate for other therapies. The sooner we're able to see that patient and try to figure out what's causing the stroke, the better off their prognosis is going to be.”

“This very severe type of epilepsy currently has no approved treatment,” said M. Scott Perry, M.D., study investigator and medical director of the Genetic Epilepsy Clinic at Cook Children’s Jane and John Justin Neurosciences Center. “This targeted drug treatment is designed to directly target the cause of their SCN8A-related seizures.”

SCN8A-DEE is a very rare genetic disorder that causes seizures and developmental impairment in children. Seizures often begin in the first 18 months of life (average 4 months) with a variety of seizure types including infantile spasms, generalized tonic-clonic, myoclonic, focal-onset and absence seizures amongst others. Common manifestations of the disease may also include other movement disorders, mild to severe intellectual disability and autistic symptoms.

The link between the SCN8A gene and epilepsy was first discovered in 2016 by a geneticist searching for the cause of his daughter’s seizure disorder. SCN8A is a gene that encodes sodium channels found throughout the nervous system and is highly expressed in the brain. Sodium channels are, in part, responsible for generating the electricity of the brain. In children with an SCN8A mutation, sodium channels can open too easily or stay open too long, which increases the production of electricity and leads to seizures. Click here to learn more about SCN8A-related epilepsy.

 “Other anti-seizure medications are often prescribed for this disorder but they have to be given in high doses to be effective, and that can lead to increased side effects,” Dr. Perry said. “The drug we’re studying selectively binds to a specific sodium channel and therefore may reduce the side effects these children often experience with other non-targeted seizure medications.”

The trial, slated to begin in the third quarter of 2021, is now accepting volunteer participants at Cook Children’s Genetic Epilepsy Clinic. Participants must be between 12 and 21 years old (inclusive) and have a confirmed SCN8A-DEE diagnosis.

Other eligibility requirements include:

• Average at least one countable motor seizure per week. Must not be seizure-free for more than 20 consecutive days.

• Currently treated with at least one other anti-seizure medication (ASM), but no more than four.

• Unable to achieve seizure freedom with at least two ASMs currently or in the past.

• Must use a nocturnal alerting system or practice consistent with standards of care at the time of screening. The alerting system/practice must be used for the duration of the study.

• Must have an adequate rescue medication regimen in place at the time of screening and use it for the duration of the study. The investigator will determine the adequacy of the rescue medication regimen.

• The participant’s parent/caregiver must be able to accurately identify seizure types, especially countable motor seizures such as grand mal, tonic, atonic or focal onset, and be able to complete a seizure diary.

Individuals who have participated in an interventional clinical trial less than 30 days prior to screening are not eligible. Other excluding criteria includes:

• Have symptoms more consistent with another epilepsy disorder.

• Currently receiving cannabinoids or medical marijuana, except Epidiolex/ Epidyolex, unless approved by the investigator.

• Currently taking systemic steroids, unless it is an inhaled medication for asthma treatment. A participant must be off of these medications for at least three months prior to screening. They may not be taken during the duration of the study, unless they are intermittent steroids to treat non-epilepsy related diseases such as allergies or dermatological conditions.

• Have a history of moderate or severe head trauma or other neurological disorders or diseases that are, in the investigator's opinion, likely to affect function of the nervous system.

• Have a clinically significant medical condition or chronic disease that, in the opinion of the investigator, would prevent the subject from participating in and completing the study, or that could complicate interpretation of study outcomes.

• Have clinically significant abnormal vital signs at the screening visit.

• Have one or more clinical laboratory test results at the screening visit that may put the participant’s safety at risk.

• Have an abnormal electrocardiogram (ECG) at the screening visit or the presence of any significant cardiac abnormality.

For more information about the trial, or to determine your child’s eligibility for enrollment, contact Cook Children’s trial investigators at 682-885-2844.

In August 2017, Ethan was playing tag with his cousins around the house when he fell. His mom, Lauren Findley, kept asking him what was wrong, but after a few minutes of coaxing, she and her husband quickly realized Ethan needed to go to the emergency department. Their 4-year-old son was showing symptoms of a stroke.

“We kept asking what was wrong and he told us he had sand all over his body and that he felt sandy,” Lauren said.” It took us a few minutes to realize he was trying to tell us he was numb, and the reason he wasn’t standing up was because he couldn’t.”

Ethan was taken by his parents to the Emergency Department at Cook Children’s Medical Center, where they were met by physicians to begin stroke protocol. He was rushed to an MRI, which confirmed Ethan sustained a stroke in the motor skills area of his brain.

Ethan could not use his right arm or hand, lost his ability to walk and lost his eye sight for a short period of time. Ethan remained in the neuro and rehab units for nearly a month, working to relearn the basic abilities his stroke had taken from him.

Ethan slowly began to make strides in all of his therapies, and now three years later, plays soccer and basketball. His parents are taking it all in, and appreciating everything Ethan has accomplished so quickly.

“It just really makes me extra grateful for every little milestone,” Lauren said. “A few weeks ago he learned to ride his bike without training wheels, and it was very special. We trusted in God, and our friends and family really came around to support us.”

While most people are unaware of strokes in children, kids can even experience strokes with no family history. Approximately six to 10 in 100,000 children are affected by stroke.

“It was definitely a shock. First of all, I didn’t know a kid could get a stroke. We didn’t understand or know much about it,” Lauren said. “Time matters for strokes in kids too. Our families don’t have a history of stroke and it really can happen to anyone.”

While the Findleys may not have been aware children could experience strokes, their quick reaction gave Ethan a chance to recover. Implemented in 2019 after Ethan’s experience, the stroke protocol in the Emergency Department is able to determine symptoms and begin treatment within minutes of arrival.

“Well-coordinated efforts to evaluate kids for stroke is required to do this as fast as possible. We need to get the information needed in order to have the treatment team poised and ready to react appropriately once the stroke is confirmed,” Dr. Acosta said. “We have accomplished this at Cook Children’s by implementing a ‘stroke alert’ protocol for the hospital. This is an accomplishment that requires the cooperation of over 15 departments to make this possible and is another sign of dedication and commitment of the staff to make this a reality.”

For most of her 20 years, Shanley Stuteville has been a patient at Cook Children’s.

She came to the medical center at the age of 3 after she began having seizures. Even as an adult, she continues to be seen by the Neurosciences team. After receiving care for so long, Shanley knows better than most how overwhelming a hospital stay can be, especially for younger kids.

“I was in the hospital last summer for my second phase [of testing], and my nurses were mentioning they were really glad I was older because a lot of the younger kids get scared,” Shanley said. “After that, my mom suggested I should write a book to help them.”

After years of testing and needles, Shanley has a wealth of empathy for younger patients. She recalls her initial feelings of fear of the unknown, but they were quickly lost when she realized her hospital was unlike any other.

Shanley began to write in July 2018, while scheduled to undergo testing at Cook Children's Neurology Epilepsy Monitoring Unit (EMU), where she would be watched 24/7 for four days to see what the source of her seizures was. The book became a family interest when her aunt began to illustrate Shanley’s medical team and created an animated world where leads, IVs and MRI machines weren’t so scary after all.

“Soon an IV was applied to my hand. Their magical spray made it something I could stand,” Shanley wrote. “It took away the pain and for that I was glad. It did not hurt, not even a tad.”

Shanley donated 50 copies of her children’s book to the Epilepsy Unit, but despite her appointments and hospital stays she’s found other ways to give back to her medical team. As a student leader at her university, Shanley completes a lot of service hours, but her service project last year was a hospital-sized treat.

As a “thank you” to her medical team, Shanley baked over 900 cookies for the Dodson Specialty Clinic staff. It took her a period of several school semesters to complete, but she delivered homemade cookies to each floor.

Although she spends an ample amount of time at Cook Children’s trying to figure out why she has seizures, it’s not uncommon for patients with epilepsy to have periods of time without seizures. Shanley would occasionally go 100 days without seizures, and even celebrated with a cake with her nearly lifelong doctor, Howard Kelfer, M.D., a Cook Children’s neurologist. However a life without seizures was never permanent.

“She’d go long periods of time without having a seizure and then one would come back around so it was really discouraging for them because they thought she was going to be over it,” Dr. Kelfer said. “It eventually became very clear that her seizures weren’t responding just to medications. It was always, ‘well she went this long without a seizure, maybe she’ll go longer this next time.”

Shanley was eventually determined as a surgical candidate after her time in the EMU last summer. Her surgery in May 2019 removed a portion of the front lobe in her brain. While she has not had a seizure since, it will take a year of no seizure activity before it can be deemed a success.

Shanley is now able to sleep through the night, a small comfort she didn’t have before her surgery. Her surgeons were also careful in the placement of her scar, which will be hidden by her hair when it begins to grow back.

“I have to say that I wouldn’t mind if it did [show],” Shanley said. “It will always be a reminder of the wonderful men and women at Cook, as well as hopefully provide an example to other children that they can walk through this and recover too.”

Shanley remains an advocate for younger patients, and is recovering quickly after her brain surgery. Her passion for patients inside the medical center has shaped her life for the last 17 years, and she is hopeful to make it a lifelong expression of gratitude.

“Shanley and her family come to all the family support groups and they’re willing to volunteer to talk to other families,” Dr. Kelfer said. “Shanley is extremely motivated to not allow her seizures define who she is.”

Following her surgery last month, Shanley will return to school this fall where she is studying to become a pediatric occupational therapist.

Ryan, 10 years old, wondered if he would ever get the chance to play the game he loves so much after a rare neurological movement disorder call dystonia changed his young life. He went from being a rough and tumble multi-sport athlete to using a wheelchair to get from class to class in his elementary school.

Ryan became the 100^th patient at Cook Children’s to receive deep brain stimulation(DBS) surgery on Monday, Nov. 30, 2015. The surgery was performed by John Honeycutt, M.D., Cook Children’s medical director of Neurosurgery.

Nearly two year later, it’s hard to imagine this little boy once struggled to walk or hold a pencil in his right hand. The successful DBS surgery has brought him back to the normal the Conder family knew before DBS robbed him of his childhood for more than a year.

“I’m the happiest mom in the whole wide world,” Kayla, Ryan’s mom, said. “When he first got diagnosed we were shocked and it was really hard because we had to have help with almost everything. But now he doesn’t need help or want help. I’m just so excited and really amazed. I’m very thankful because he’s like he was before.”

Last year as Ryan his family wait out in the lobby for their appointment, Dr. Honeycutt happens to walk by on his way into the Jane and John Justin Neurosciences Center. After a couple of steps, he realizes who he has passed and stops in his tracks. He comes back to say hello and marvels at the success of Ryan’s surgery.

“It’s a modern medical miracle,” he tells Kayla.

Then it’s time for a visit with Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. He sees Ryan every three months.

Ryan spent significant time with Dr. Marks before and after surgery at the Cook Children’s Motion Lab, which is equipped with technology that enables a specialized team the ability to analyze the unique movement of each individual patient and plan a treatment plan for them.

Ryan goes through a routine checkup with Dr. Marks. Then they go out to toss a rubber ball to each other. Dr. Marks leaves the game for a bit and gets a reflex hammer that he uses as a make-shift bat. They are having fun and both are in a great mood.

“This is so rewarding. This is why you have a DBS program because you get kids like this," Dr. Marks said. They come back to being completely normal kids. They come back to doing everything they were doing before the surgery. Everything they want to do. It’s perfect.”

Ryan has been cleared to play baseball, basketball and at recess. He’s not allowed to play contact sports like football or soccer. But he does take his football to school to play catch.

His friends call him the robot because of the surgery that includes two battery-operated pulse generators, much like pacemakers, implanted near the collarbone. Ryan doesn’t mind the nickname at all. He kind of enjoys it.

He shows his friends a video Cook Children’s made as it followed Ryan toward his surgery last year. And what do they say?

“They are like, ‘Wow. It’s amazing what modern technology can do these days,” Ryan said.

Did we mention he’s a really funny kid? Even during his worst days, he maintained his sharp sense of humor. But now the smiles come much easier to everyone in the household and even the tears aren’t so bad lately.

“When he was looking at the video the other day, every time I watch it I cry because I get to see where he was and where he is now,” Kayla said. “It’s not crying because I’m sad. It’s crying because I’m happy. I tell him, ‘Ryan I love watching it but it makes me cry.’

Kayla noticed something was wrong with her little boy around September, 2014. She noticed Ryan running differently than normal during one of his baseball games.

When asked what was going on, Ryan said he couldn’t help it. Then after noticing that his toes on his right foot were curling in, Kayla took her son to the family doctor.

Kayla remembered she had cousins who had dystonia and called her aunt to talk to her about it. After the conversation, Kayla arranged a referral to see Dr. Marks.

Dr. Marks commented that Kayla reminded him of someone and then as they talked, he found out that one of her cousins was not only a dystonia patient, but the first one that Dr. Marks treated at Cook Children’s who had deep brain stimulation surgery performed on her. The surgery was done 15 years ago before Cook Children’s began its own DBS program.

After an initial diagnosis, Dr. Marks verified that Ryan had a genetic version of dystonia.

Dystonia is a disabling disease and sometimes painful condition that limits children in many ways, impacting motor, cognitive and social development. Because medications have a limited effect on most forms of dystonia, Cook Children’s began a Deep Brain Stimulation Program of its own in 2007.

Kayla admits to being scared and nervous at the unknown of surgery. But after talking to Dr. Marks and his team, she hoped this would be a fresh chance for Ryan to return to the little boy he was before dystonia began to take over his body.

Ryan walked with his right foot on his toes and his right arm is now curled in, making it difficult to use. She hoped for Ryan to be able to walk and run like before, but also to use his right hand to write. He had to dictate his work at his elementary school.

Kayla said the hardest part was watching the things Ryan could do and how active he was, playing sports and being a typical little boy, to where he needed help walking, taking a shower or cutting up his food.

But that was then. Now Ryan is back to being the fun-loving, sports playing, ornery little boy he was before the surgery.

“The best part of all this … he’s right there,” Kayla said pointing to Ryan. “He’s walking, running and jumping. He’s able to take care of himself. No parent ever wants to see their child go through what Ryan went through. But hands down, we got more than we ever imagined.”

Learn more:

• What Is Deep Brain Stimulation?
• What Is Dystonia?
• The architect: Warren Marks, M.D.
• The surgeon: Helping kids like his own
• Cook Children's Motion Lab
• Cook Children's Movement Disorders Program

But nine months ago, that choice was anything but simple.

Despite trials of at least six different medications – nothing stopped Owen’s daily seizures. The Neurosciences team at Cook Children’s decided to make a pitch that’s almost too much for any parent to comprehend.

Owen’s seizures are unique in that they arise from a large area of his brain. The epilepsy team believed his best chance of becoming seizure-free was to disconnect the left side of his brain from the right. They wanted to sever the fibers (corpus callosum) that connect the two sides of Owen’s brain.

One traditional approach to this type of surgery is called corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While previously considered by many to be the “gold standard,” with good seizure control rates after surgery, it involves a lengthy recovery in the hospital and then at home.

While Owen’s family wanted better seizure control, they were reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., was one of only a few pediatric neurosurgeons in the United States, who has experience doing similar procedures using less invasive endoscopic techniques.

Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well, we were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

A quick hospital stay was welcome news to Owen’s family. He’d already spent too much time at Cook Children’s fighting for his young life.

Owen’s story really begins at 8 months of age when his parents noticed weakness on his right side. His parents knew something wasn’t right with their son and they made an appointment for Monday with their pediatrician. But over the weekend they became afraid when Owen stopped using the right side of his body.

His parents rushed Owen to the nearest emergency room in Cleburne, Texas. From there, he was airlifted to Cook Children’s by CareFlight.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

His initial scans showed a large stroke in the left side of his brain which soon was discovered to be related to a new diagnosis of acute myeloid leukemia. Owen endured four phases of chemotherapy and fortunately entered remission where he remains today.

While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it was his seizures that proved to be the most debilitating obstacle to overcome.

Owen’s first seizures occurred in the days following the stroke, but they were initially controlled with medication. He was able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3.

His parents say Owen’s seizures involved periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events were described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite the trials of at least six different medications – nothing helped his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., referred Owen to the Cook Children's Comprehensive Epilepsy Program for epilepsy surgery evaluation.

Once Cynthia Keator, M.D., took over his case, she began a workup to determine where in the brain his seizures were arising, knowing the likelihood of seizure control with medications was minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captured many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan showed multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

With options running out, the Neurosciences team suggested the trailblazing endoscopic surgery and introduced the family to Dr. Hansen.

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy, playing with his monster trucks, who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Given the successful outcome with Owen, Cook Children’s has since performed two additional endoscopic procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. He has progressed in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

The phone from Clinical Genetics came at 5:12 p.m. on April 10, 2018. Grace Wilson-Rabel remembers the exact time and date because it’s the moment that changed her life.

Candace Gamble, M.D., is a clinical geneticist with Cook Children’s, and the call was to let Grace know her daughter’s diagnosis.

Wilson was a secretary for Cook Children’s NICU and she motioned for her charge nurse to say she needed to take the call.

“OK, we received Austyn’s test results back. Her test is positive.”

Austyn had been diagnosed with neurofibromatosis type 1 (NF1), a genetic disorder that affects 1 in 3,000 people throughout the world. NF1 impacts children in many different ways, including light brown skin spots, neurofibromas (small benign growths) on or under the skin and/or freckling in the armpits or groin.

About 50 percent of people with the condition have learning challenges. Health concerns also include the softening and curving of bones, and curvature of the spine (scoliosis), and occasionally tumors may develop in the brain, on cranial nerves or the spinal cord.

While these tumors are usually not cancerous, they can cause health problems by pressing on nearby body tissues.

Following the diagnoses, Grace immediately felt cold fear run through her entire body and she broke down in tears.

After all, everything had changed.

Austyn was born Jan. 23, 2017.

Grace’s pregnancy was normal until her thirty-fifth week when she began to experience high blood pressure. Because it continued to be elevated, she was induced at 37 weeks. Austyn was born weighing 6 pounds, 12 ounces.

“There were absolutely no signs that she had a genetic condition hiding inside of her,” Grace said. “At 2 days old, we had her newborn check-up and discovered that her bilirubin was high.”

At 2 weeks old, Grace noticed her daughter was working hard to breathe and made a “horrendous noise” every time she inhaled, so back to the pediatrician’s office she went with her daughter.

Following three more visits to the Emergency Department at Cook Children’s, Grace made an appointment with Pulmonology where Austyn was diagnosed with laryngomalacia, a congenital softening of the tissues of the voice box, or larynx, above the vocal cords. This new diagnosis caused a whole other set of issues. Austyn’s suck/swallow/breathe coordination was off, which caused failure to thrive and a hospitalization at 7 months.

Due to her low weight and delayed development, Austyn was tested for cystic fibrosis.

“Thankfully that test came back negative, but we were placed in physical therapy because despite working with her every day, she did not crawl until 11 months and did not walk until 19 months,” Grace said. “We would find out later, with her diagnosis, that this is all very common for kids with NF.”

At 3 months, Grace noticed Austyn had three brown spots on her abdomen.

“I didn’t really think too much of it other than I thought they were cute birth marks,” Grace said.

At her 4-month checkup, Grace pointed out the spots to her pediatrician, Joyce Rafati, M.D. Dr. Rafati looked at them and said she thought it could be neurofibromatosis, but it was too early to tell.

By the age of 10 months, Austyn had 13 spots. Dr. Rafati referred Austyn to be seen by Dr. Gamble in Genetics to test for NF.

“The earliest we could be seen by the geneticist was January 29, 2018 – which was four months out,” Grace said. “The hardest part of this whole journey is patience. The wait time to see a specialist always feels so far away and then after the specialist visit we are left in limbo because there are so many ‘wait and see’ moments with NF.”

Austyn received a simple blood draw to test for the genetic condition, but it would take six or more weeks for the results. The test is expensive and has to be approved through insurance, which took another four weeks.

Once she received the approval, she took Austyn to the lab at the Dodson and had Austyn’s blood drawn on March 1, 2018.

Six weeks after the test, Grace received the phone call with the results.

“Processing that was one of the hardest things I’ve ever had to do,” Grace said. “I’m still processing it to this day. You have to go through a grieving process that sometimes takes months to years. You may grieve it your whole life but you have to be strong and you have to push through. NF1 brings lifelong doctor appointments and ‘what if’ questions. And, every day that there isn’t something going on and you’re not in the doctor’s office is a win.”

Grace said what helped her get through the most difficult time of her life was her husband, George. “He’s been my rock through this,” Grace said.

A few months later, Grace and George took Austyn to meet her new neurologist, Jeff McGlothlin, M.D.

“He was amazing, so gentle and thoughtful with Austyn and her condition,” Grace said. “And with talking to us. He answered all of our questions and gave us an idea of what the game plan would be.”

Austyn was supposed to have surgery to fix her airway a couple of weeks after her neurologist appointment so Dr. McGlothlin decided to piggy back on the surgery and do her first MRI to test for optic nerve gliomas the same day so she would only have to be sedated once. Gliomas are non-cancerous brain tumors that can affect a child’s vision.

“The day of the surgery came and we anxiously handed our sweet 18- month-old baby over to the arms of the doctors and nurses,” Grace said. “We knew she was in great hands but it didn’t take away that fear and sadness of what she is having to go through.”

About four hours later Austyn was out of surgery and recovering in the PICU at Cook Children’s. All went well. She had a great night and the next morning she was in good spirits and eating. The MRI was the last thing on Grace’s minds.

Around 10:30 in the morning, while still at Cook Children’s, Grace received a call from the neurologist’s office.

“I didn’t even think that they would be calling me to tell me bad news, I just thought they might be calling to tell me everything looked great. I was wrong,” Grace said. “The woman on the other end said, ‘Dr. McGlothin wanted me to let you know that there are two optic gliomas.’ I couldn’t even breathe. ‘What?’ I asked, choking back tears. She repeated the news and all I could say was, ‘This has been the worst year,’ and I sobbed and sobbed.”

Grace watched Austyn sleeping peacefully. She was so small and innocent and unaware that she had something so concerning inside her “precious little head.”

“Austyn has had a few more eye appointments and another MRI and I am happy to report that as of today her vision is unaffected and her tumors are stable,” Grace said. “We hope and pray that they stay this way. Her neuro-oncologist is pretty confident that she will never need treatment. Since these tumors are inoperable the only treatment option is chemotherapy.”

Grace said Austyn has been through more needle sticks, tests, hospitalizations, etc. in her short two years of life than most adults have. But throughout the process, Grace said she couldn’t be more grateful for Cook Children’s and the team that has taken care of her daughter since that day when her life changed: her pediatrician Dr. Joyce Rafati, gastroenterologist Danny Rafati, M.D., endocrinologist Teena Thomas, M.D., neurologist Dr. McGlothin, neuro-oncologist Jeffrey Murray, M.D., her ENT Michelle Marcincuk, M.D., and pulmonologist Nancy Dambro, M.D.

“Austyn has rocked everything like a champ,” Grace said. “She knows when they want to listen to her lungs, heart and belly, where the stethoscope goes. She knows where the blood pressure cuff goes and holds her arm or leg out for it. She never complains. And all of her doctors and nurses are her friends.”

Dr. Keator, who is a pediatric neurologist and epileptologist at Cook Children’s, began volunteering at Cook Children's at the age of 14 as a title holder with the Miss Texas Organization. Along with many of the other titleholders, she would perform her talent for patients in the atrium. Back then she performed ventriloquist routines.

“My fondest memory is being in the Atrium performing and you look up and see all the children and their parents looking down and watching you,” she said. “It was so daunting then and now I walk past it all the time.”

Then in 1998, through a senior internship program during her senior year at Trinity Valley School, she spent her spring semester with Hematology and Oncology at Cook Children’s.  

The department held a special place in her heart because her cousin battled cancer there. That stint with the doctors made such an impact on her that after completing her internship, she continued to volunteer at the medical center.

When asked if she always wanted to be a doctor, Dr. Keator said, “I always knew I wanted to do something in the medical field. We all have that childhood dream of what we want to be when we grow up, and even then I always wanted to help people, especially children.”

As a volunteer, she tried to ask good questions and absorb as much knowledge as possible to prepare her for medical school. She learned the importance of listening to the patients and their families. She also saw science come to life. It wasn’t just about studying words in a book; it was seeing how medicine and medical care actually worked.

“Volunteering here I also realized how little I knew!” Dr. Keator said. “Just regular biology or chemistry class in high school is nothing compared to what people do in real life. It was a process, where I learned that being a doctor was about more than just being smart, it really takes a lot of compassion and motivation. I was able to see the interaction of the doctors and nurses with the patients. I realized I had so much more to learn than what was just in a textbook. ”

It was through her volunteering at Cook Children’s that she developed her interest in working with children, especially those needing chronic or long-term care. “I learned my true passion of wanting to help others was the relationships you develop with your patients and their families,” says Dr. Keator. “In neurology, we care for many children with neurological conditions that require close follow up and care, as many of our patients are cared for from birth through adulthood. Of course, I enjoy the pathophysiology of neurological conditions, especially epilepsy, but, what I also love about my field is that you become part of the team and you truly get to know the family.”

Now at Cook Children’s, Dr. Keator sees new people learning those same life lessons. “I see volunteers today at Cook Children’s and they are all age groups who choose to spend time with our patients. I’m so thankful so many people want to come here and volunteer and help with the children. It’s pretty incredible. “Everyone should volunteer. It’s good for the soul.”

Dr. Keator said that working at Cook Children’s is “totally surreal” because it was everything she aspired to do as a child. “It’s really cool to look back and say, ‘Wow, I did it.’”

Cook Children’s has been utilizing intranasal ketamine as a rescue treatment to break unrelenting migraine attacks in the emergency room and inpatient setting since December 2016. Originally, the drug was utilized out of necessity due to a shortage of dihydroergotamine – the medication previously used most frequently for persistent migraine attacks which failed to respond to outpatient therapy. The team presented their findings at the International Headache Conference in 2017.

“Until that time, little to no experience with nasal ketamine had been reported in pediatric patients,” said Adrian Turner, a clinical pharmacist at Cook Children’s. “However, our institution’s experience is broadening the horizon of potential treatment options.”

Now the U.S. Food and Drug Administration has approved esketamine, a chemical compound similar to the anesthetic ketamine, to relieve depression in hours instead of weeks. The drug, the first to be approved to fight depression since 1988, is believed to help patients who have been treatment resistant to other depression therapies.

Esketamine, developed by Johnson & Johnson, will be marketed under the name Spravato® and is a nasal spray that allows the drug to be absorbed through the lining of the nose, directly to the blood stream.

Patients using Spravato® will also be required to enroll in a Risk Evaluation and Mitigation Strategy (REMS) program to monitor for serious side effects related to sedation, dissociation, abuse/misuse and to support its safe use. Patients will be required to self-administer the drug under direct observation of a healthcare provider.

“This is potentially a game changer for millions of people,” Dr. Dennis Charney, dean of the Icahn School of Medicine at Mount Sinai in New York, told NPR. “It offers a lot of hope.”

At this time, no plans have been made at Cook Children’s to use ketamine for depression, but intranasal ketamine has been vital for helping patients with severe migraines.

Intranasal ketamine for migraines not only worked for a majority of Cook Children’s patients (almost 70 percent of patients between December 2016 and October 2017), but was safe and well tolerated. Any side effects seen, some dizziness and very mild dissociative effects (i.e. feeling funny, out of body experience) were mild and didn’t last longer than one hour after administration.

No patient had to stop due to side effects.

Turner said using ketamine for migraine offers many benefits:

1. Patients don’t need an IV or injection to receive treatment.
2. The number of medications needed to treat the pain may be reduced.
3. The time needed to treat the pain may be reduced.
4. It provides patient with a wider variety of options to treat their migraine.

Ketamine was first created in the 1960s and was largely used as a battlefield anesthetic and veterinary medicine. By the 1980s, hospitals were using the drug for sedation and severe pain.

Until recently, the FDA approved the drug in patients 16 and older for general anesthesia (dental procedures, outpatient surgery, intubation). Compared to other medications used for sedation/anesthesia, ketamine is relatively safe due to less effects on breathing and blood pressure.

In the past few decades, ketamine became the focus of studies for the treatment of depression. The Department of Health and Human Services reported an estimated 16.2 million adults and 3.1 million adolescents aged 12 to 17 in the United States had at least one major depressive episode. This is especially important when considering the rates of suicide. In 2016, the Centers for Disease Control and Prevention (CDC) reported suicide as the number 10 overall cause of death with more than 44,000 deaths attributed to suicide reported. Even more troubling, suicide was reported to be the number 2 overall cause of death for people aged 10-34, number 4 for people aged 35-54, and number 8 for people aged 55-64.

“Expanding treatment options is not only beneficial to improve the quality of lives of patients with depression, but it may also help save many lives in the future. Depression can be very difficult to treat,” Turner said. “Compared to other diseases and diagnoses, depression is not a one-size fits all treatment. Expanding the treatment options is a huge benefit to patients who have exhausted several treatment options with little to no relief.”

Aside from the new indication for depression, ketamine and esketamine both have potential use in post-traumatic stress disorder (PTSD), migraines, refractory/chronic pain conditions, and seizures. There are active studies underway in the U.S. and internationally examining the use of ketamine to treat PTSD, status epilepticus, and oral ketamine to treat chronic pain in adults and children. Cook Children's Pain team is currently treating patients with chronic/refractory pain with a ketamine IV and oral ketamine.

Some may know ketamine as a party drug. Ketamine (also known as Special K, Super K, and Vitamin K among other street names) is known as a potential drug of abuse and a drug used to facilitate sexual assault crimes. When taken illegally, users often inject, snort, or smoke the drug to feelings of calmness and out of body experiences.

Unfortunately, because these are often taken in very large doses, users also experience complications such as hallucinations, immobility, amnesia, and unconsciousness. It’s especially dangerous when given in very high doses or mixed with other drugs and/or alcohol because this greatly increases the chances of serious health problems and/or death. The World Health Organization notes that ketamine is a potential drug for abuse, but the actual incidence of dependence or overdose is rare. Chronic abuse has been linked to urinary tract problems.

But under the guidance of health care providers, ketamine has been highly beneficial.

“Our experience with ketamine has been positive,” Turner said. “The success we have seen at Cook Children’s combined with the approval of esketamine for refractory depression is very exciting. As a health care professional, it is invigorating to see years of research produce positive outcomes for our patients. I look forward to seeing Cook Children’s on the forefront of contributing to this new frontier. ”

But other than that it would be hard to notice a difference in him and any other 5-year-old boy after becoming the first child at Cook Children's to undergo a trailblazing endoscopic epilepsy surgery.

Owen’s story begins at 8 months of age when his parents notice weakness on his right side. His parents know something isn't right with their son and they make an appointment for Monday with their pediatrician. But over the weekend they become afraid when they see Owen has stopped using the right side of his body.

His parents rush Owen to the nearest emergency room in Cleburne, Texas. From there, he's airlifted to Cook Children’s by CareFlight.

His initial scans show a large stroke in the left side of his brain which is soon discovered to be related to a new diagnosis of acute myeloid leukemia. He endures four phases of chemotherapy and fortunately enters remission where he remains today. While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it's his seizures that prove to be the most debilitating obstacle to overcome.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

Owen’s first seizures occur in the days following the stroke, but they are controlled with medication. He’s even able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3. His parents describe his seizures as periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events are described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite trials of at least six different medications – nothing helps his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., refers Owen to the Cook Children's Justin Comprehensive Epilepsy Program for epilepsy surgery evaluation. Once Cynthia Keator, M.D., took over his case, she begins a workup to determine where in the brain his seizures were arising, understanding the likelihood of seizure control with medications is minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captures many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan shows multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

Given that his seizures arise from such a large area of Owen's brain, the epilepsy team feels his best chance of seizure freedom is to disconnect the left side of his brain from the right by cutting the fibers (corpus callosum) that connects the two sides of the brain.

One traditional approach to this type of surgery is corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While considered by many to be the “gold standard” with good seizure control rates, after-surgery care involves a lengthy recovery in the hospital and then at home. While Owen’s family wants better seizure control, they’re reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., is one of only a few pediatric neurosurgeons in the United States who has experience doing similar procedures, using less invasive endoscopic techniques. Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well. We were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

Given the successful outcome with Owen, Cook Children’s has since performed two additional procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. Just the progress in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

She’s trying to be calm, but you can see her fidget as she waits for M. Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s, to walk in the room.

As soon as Dr. Perry walks in the door, the anxiety that Stephanie’s been trying to hide melts away.

For a moment, this isn’t a doctor and patient family greeting each other, it’s old friends catching up. After all, Dr. Perry began caring for Aaden when he was only 4 days old and he has been with the family throughout his treatment for seizures as a result of tuberous sclerosis complex.

But then it’s time to get down to business.

“I find it easiest just to talk with you about what we went through in conference so you know what I told everybody when we came up with our decisions,” Dr. Perry tells Stephanie.

He is referring to a previous conference where a team of neurologists, a neurosurgeon, a neuroradiologist and more gathered to discuss a treatment plan for Aaden. Now it’s time to discuss the plan with Stephanie.

First, Dr. Perry covers familiar ground. He talks about Aaden’s history. In the conference with the Cook Children’s staff, and now in the room with Stephanie, Dr. Perry marvels at her ability to detect Aaden’s seizures. “It’s almost psychic the way she knows her child is about to have a seizure. She detects a slight difference in her little boy’s mood or a quick far-away look,” Dr. Perry said. “Stephanie is never wrong in detecting the seizures.”

“I’ve always been able to notice it, as soon as he started having seizures,” Stephanie said. “To be honest, I don’t know how I knew. I just know when he’s having one. It’s almost as if he looks at me like. ‘Hey mom something’s wrong.’ I can tell by the look on his face. He’s looking for someone to comfort him or grab him.”

After they go over his history, it’s time to look ahead at what’s next. David Donahue, M.D., a neurosurgeon at Cook Children’s, will perform a surgical procedure called stereo-EEG to pinpoint the location in Aaden’s brain that is causing his seizures.

“Aaden will undergo Stereo EEG placement,” Dr. Perry said. “The initial preoperative workup has localized his seizure onset to a region of the brain on the right side-most likely towards the back part, but he has a number of tubers and potentially epileptogenic areas within the region we’ve localized. We will use Stereo EEG to further hone the localization of seizure onset in hopes of limiting any potential resection to the smallest area possible. We will place a number of depth electrodes into the brain to map out the area of onset – the epileptogenic network. From that information, we will then propose a final epilepsy surgery option to the family.”

Dr. Perry carefully explains the procedure. They talk about the possible risks. For this procedure and where the placement is taking place, a loss of vision is the biggest concern if they have to take out brain tissue in the back, but they hope to avoid this with more precise mapping through Stereo-EEG.

Stephanie admits to being scared, but she also lets Dr. Perry know she believes in him and trusts him completely. They finish talking about the procedure. Dr. Perry asks Stephanie if she has any more questions. Then he examines Aaden briefly before telling the family goodbye.

Next up, Dr. Donahue walks into the room. The seasoned neurosurgeon has performed countless surgeries on children’s brains, but he knows this is never a moment that the patients’ families take for granted.

He tells Stephanie he understands she’s nervous. He goes over the details of the surgery. He explains the look of the electrodes that will be placed in Aaden’s brain (think piano wires). He lets her know that this is what’s best for Aaden as they look ahead to a resective surgery that will hopefully help control or even end the little boy’s seizures.

By the end of the meeting, you can see a different Stephanie. She’s still scared, but there is new found assurance and confidence of the people taking care of her little boy.

Dr. Perry sympathizes with Stephanie, but he is confident this is the best opportunity to help Aaden.

“Epilepsy surgery is an art – and the ‘value’ of the surgery, like art, is sometimes in the eyes of the beholder,” Dr. Perry said. “For example, seizure freedom is the goal of every surgery, but it can sometimes come with adverse functional consequences, like weakness or vision loss. Some consequences obviously outweigh the benefit of seizure reduction/freedom and make surgery a no-go, in others the functional consequences may be acceptable.

“The art is a discussion and decision making process between the epilepsy team, the family, and the patient to decide where the value lies. The surgery itself is an art – as there are multiple potential ways to do it – not just the technologies used (laser ablations, resection, neuromodulation, etc) but the way the technique is used, for example, approaching from different angles to avoid damage to normal brain. These different options all come with a variety of benefits/risks, each which must be weighed with the potential to achieve the end goal of seizure freedom with minimal adverse effects.”

But when they realized she wasn't using her left arm, they became alarmed.

Autumn admits it took a little bit to be concerned because the last thing on her mind was that her young daughter could have a stroke.

"I didn't even know kids could have one," Autumn said.

Kynlee was born on March 5, 2015, in Oklahoma. Autumn and Darrell hoped for a healthy child, after watching their oldest daughter, Addison, now 9 years old, battle cancer throughout her young life.

But from the beginning, Kynlee faced health problems. She was born with bladder dysfunction and was cared for by Blake Palmer, M.D., a pediatric urology specialist and surgeon. 

"Our older child faced so many medical problems and we kind of became used to having something wrong with our child," Autumn said. "But to have another child with medical issues was very emotional."

Even with everything they had gone through at this point, nothing prepared Autumn and Darrell for what occurred on May 2017 in their little town of Coyle, Okla.

When things didn't change with Kynlee's left arm, they went to their local ER where Kynlee was initially diagnosed with a stroke. She was transferred to a larger hospital in Oklahoma, and after a lengthy hospitalization, the family returned home with limited information about Kynlee's condition.

Once again Kynlee started having similar stroke symptoms in July 2017, but these were thought to be seizures. At first doctors placed Kynlee on seizure medication, but that didn't work because that wasn't effective against the little girl's mini strokes.

At the same time this was going on, doctors found Kynlee needed heart surgery to repair a hole they found in her heart. Kynlee had been scheduled for cardiac surgical repair at another hospital in July 2017, but it was canceled due to high risk and complexity of her medical condition.

Autumn and Darrell were at a loss by the end of the year and struggling to find some hope for their daughter's condition. They found it in an old friend. Dr. Palmer had moved to Cook Children's and was still seeing Kynlee for her urological condition. He suggested Kynlee be seen by Cook Children's Comprehensive Stroke and Thrombosis Program.

Lori Buechler, a nurse in Urology who works with Dr. Palmer, coordinated the family's care with Jo Tilley, the stroke and thrombosis PNP, to transfer records, imaging studies and complications involved with dealing with multiple specialties.

"Dr. Palmer and his nurse Lori have always been there for us," Autumn said. "I'm not sure we could survive without their help."

The Thomas family arrived at Cook Children's Stroke Comprehensive Clinic in January 2018. "We saw the stroke team," she said. "And I mean it was a team. We saw everyone you could think of. We stayed three days at Cook Children's and we found everything in three days that we had waited months to find out. We had a diagnosis. They performed four or five tests that no one had ever performed on her in Oklahoma and she was seen by every specialist you can imagine in that time

"When she got here, Kynlee's condition was severe and significant, which placed her at imminent risk for further harm due to stroke or cardiac arrest," said Fernando Acosta, M.D., a neurologist and associate medical director of Stroke and Thrombosis Program at Cook Children's. "We felt it was in Kynlee's best interest to be admitted as quickly as possible for further investigation." Marcela Torres, M.D., a hematologist and director of the Stroke and Thrombosis Program at Cook Children's, agreed with Dr. Acosta. Kynlee was in a precarious state because, despite her preventive antiplatelet therapy, her congenital heart disease would likely also affect her brain perfusion. So, after her admission, several sub-specialists were quickly consulted, including Cardiac ICU, Cardiology, CV surgery team and Sami Hadeed, M.D., a pediatric pulmonologist.

During her initial admission, Kynlee was placed on the Epilepsy Monitoring Unit without any antiepileptic medication. The EEG showed no signs of epilepsy and she was taken off of her medication. Imaging indicated Kynlee did have a new stroke to her right front lobe. This explained Kynlee's earlier episodes where she lost movement on her left side.

Prior to genetic testing, Kynlee was initially diagnosed with a cerebral vasculopathy, similar to Moya Moya syndrome, a rare disease that affects arteries in the brain.

"Kynlee's treatment plan is an example of the complexity of a pediatric stroke patient," Dr. Torres said. "Because of our stroke program and our involvement with the International Pediatric Stroke Society and pediatric research studies, we are able to provide patients with the highest level of pediatric stroke care."

Then there was that matter with Kynlee's heart. Cardiology completed an echocardiogram and formal evaluation. Vinod Sebastian, M.D., a pediatric heart surgeon at Cook Children's, performed the surgery on Kynlee in late January to complete closure of her aortopulmonary window.

"It was definitely a relief and comfort just because we had people on our side who knew what was going on and wanted to help us," Autumn said. "But also because it was all happening so fast, it was just kind of ... 'WHOA!'"

Along with everything else going on with their two daughters, major changes were occurring in the Thomas household. Autumn delivered her third child, a boy named Parker, in January 2018. Parker was staying at the Ronald McDonald House near the medical center with Darrell, who had recently been laid off from work.

The family was discharged in early February and Kynlee and her parents returned to Oklahoma. Everything was fine Friday and Saturday, but on Sunday Kynlee lost the feeling in her left side again. She was taken to an emergency room in Oklahoma where scans verified another stroke. She was transported by helicopter on that Monday back to Cook Children's. Once at the medical center, she lost movement on her right side as well.

Kynlee remained in the pediatric intensive care unit for a week. Doctors found she wasn't getting enough blood flow to her brain due to her progressive cerebral vascular disease. Pediatric specialists from Neurology, Hematology and Cardiology monitored Kynlee as they balanced her medications to treat her blood pressure and decrease her chance of another stroke.

Over the next week, doctors eventually found the right mix of medications to increase her blood pressure enough to improve the perfusion of her brain. She was monitored closely.

Kynlee also showed improvement in functionality. At the time of discharge she was able to crawl and was recommended for an orthotics consult, as well as outpatient physical and occupational therapy.

Since her discharge, Kynlee's genetic testing that had been ordered at Cook Children's, came back. She was diagnosed with an ACTA2 gene mutation, which causes people to be predisposed to vascular disease including strokes, coronary artery disease and aneurysm.  Autumn says the entire family plans to go through genetic testing for the gene as well.

Things are looking up for the Thomas family. Darrell has a new job. Their older daughter is doing well and Parker shows no sign of any health problems. Kynlee is back home in Oklahoma and doing well thanks to the medications doctors at Cook Children's diagnosed specifically for her condition.

"Kynlee is starting to walk again," Autumn said. "She hasn't been able to walk since her stroke in February. She's doing great. I'm watching her trying to feed her baby brother a Barbie doll bottle."

Autumn laughs. She welcomes this very typical, very silly problem.

They have come such a long way just to feel their own sense of normal.

Stroke and cerebrovascular diseases are within the top 10 causes of death among children and up to 70 percent of stroke survivors have residual neurological impairment.

Because the causes and symptoms are so different, treating stroke in children requires specialized training. Cook Children's Comprehensive Stroke and Thrombosis Program is one of 16 such centers in the U.S. As members of the International Pediatric Stroke Society, the Cook Children's team works with a network of other pediatric hospitals to improve stroke care worldwide.

The program is led by Medical Director Marcela Torres, M.D., a hematologist/oncologist and Co-Director, Fernando Acosta, M.D., a neurologist.

The team is committed to the early recognition, treatment and prevention of pediatric stroke through research, innovation and education.

The program allows patients to be seen by multiple specialists at once, instead of scheduling numerous visits. Patients can see pediatric sub-specialists from:

• Hematology
• Neurology
• Neurosurgery
• Neurodiagnostics
• Neuropsychology
• Interventional Radiology
• Social Worker and Child Life

A panel convened by the FDA voted 13-0 that the agency should approve the drug as treatment of these two rare forms of epilepsy. The FDA will make a final decision to approve the medicine by June 27.

Cook Children’s participated in several of GW Pharmaceutical’s clinical trials of Epidiolex used to treat children over the age of 2 with Lennox Gastaut and Dravet and continues to enroll children in a trial of the drug for treatment of seizures in Tuberous Sclerosis Syndrome. “The trials were the largest of their kind in the world and have provided the gold-standard evidence needed to prove cannabidiol can be effective as a treatment for epilepsy,” said M. Scott Perry MD, Medical Director of Neurology and principle investigator for the trials performed at Cook Children’s.

The FDA gave the drug a favorable review, stating that it provides “substantial evidence” of the drug’s effectiveness in treating Lennox-Gastaut syndrome and Dravet syndrome.

“Although the review is still ongoing, the risk-benefit profile established by the data in the application appears to support approval of cannabidiol for the treatment of seizures associated with LGS [Lennox-Gastaut syndrome] and DS [Dravet syndrome]," the FDA said in a report.

Dr. Perry explains that Epidiolex is an essentially pure CBD substance produced under strict standards to ensure the drug is the same with every batch. Once approved, the drug would be obtained from a pharmacy, prescribed by a doctor and more likely to be covered by insurance.

“My hope is this will be the first of many drugs derived from the cannabis plant,” Dr. Perry said. “This drug has gone through a rigorous process to be approved and I think it will help people feel safe taking the medication. I hope it also encourages more research into what the hundreds of other substances in the cannabis plant can do for patients.”

Previously On This Topic:

• 9 Facts about Cannabidiol (CBD) Oil and the Texas Compassionate Use Act
• Texas legalizes non-euphoric cannabdiol for seizures in epileptic patients
• Drug in Cook Children's epilepsy trial shows positive results in separate trial
• Success in CBD study: Cook Children's researchers play a vital role
• Cannabis oil trial ongoing at Cook Children's
• Study: Cannabis Oil Can Dramatically Decrease Epileptic Seizures

What are some of the presentations of SCN2A-related disorders? Children with SCN2A can often present with epilepsy which may manifest in several levels of severity. SCN2A was first discovered as a cause of benign familial neonatal infantile seizures (BFNIS), a syndrome presenting in multiple family members with seizure onset as neonates and infants with normal developmental outcome and good seizure control. Later, SCN2A was discovered as a cause of infantile spasms and other early onset severe epilepsies of childhood, the so-called early infantile epileptic encephalopathies. SCN2A has been implicated as one of the causes of Ohtahara Syndrome, Dravet Syndrome, Migrating Partial Epilepsy of Infancy and West Syndrome amongst others. Finally, SCN2A has been found to be a major cause of intellectual disability, schizophrenia, and autism which may occur in the absence of epilepsy.

What is the cause of SCN2A-related disorders? SCN2A is a gene which encodes a sodium channel found within the initial segments of neurons. This location is important to determining whether a neuron will generate a signal or not, thus a reason mutations can present with neurological symptoms. Most mutations in SCN2A are de novo, meaning they occur spontaneously and were not inherited from the parents. This is often the case in more severe disease presentations. SCN2A may be inherited in an autosomal dominant manner in more benign presentations such as BFNIS.

How are SCN2A mutations diagnosed? Diagnosis is made using genetic testing in patients with appropriate clinical features. MRI is often normal and EEG findings may vary.

Is there a treatment for SCN2A-related disorders? Unfortunately, there is not yet a cure for SCN2A-related disorders. Certain sodium channel drugs (for example, phenytoin, lamotrigine) have demonstrated more favorable responses for seizure control in some patients, while in others sodium channel drugs may aggravate seizures. This may be due to how the mutation impacts the function of the sodium channel (gain of function versus loss of function). Aggressive control of seizures with a clear rescue plan for prolonged seizures is important. Other manifestations such as movement disorders, dysautonomia, and neurobehavioral manifestations can be managed to some degree with medications and therapy.

What other problems might be found in patients with SCN2A disorders? In addition to epilepsy and developmental delays, other manifestations of SCN2A can include movement disorders such as dystonia, abnormal gait, ADHD, autism, dysautonomia (i.e. problems with heart rate, blood pressure, and temperature regulation), and GI problems such as feeding difficulties or reflux.

For more information about SCN2A and SCN2A Awareness Day, visit www.scn2a.org.

It’s not about being rude or even shy, it’s just he wants to make darn sure the love is spread around for the people that make up the Neuro-Oncology Program at Cook Children’s.

“That’s probably the reason why I don’t like to do these interviews! I don’t want the attention on me,” Dr. Murray said. “The bottom line is the kids and the team that takes care of them. It’s not me. There has to be a leader. I understand the hierarchy that has to be there. I accept that, but begrudgingly. I am proud of our Neuro-Oncology team. We are truly interchangeable in so many ways.”

This is not just humble speak on Dr. Murray’s part. A large part of the reason he became Medical Director of Neuro-Oncology is because one of his gifts is to build a solid, capable team that he empowers to do their work to the best of their ability.

When asked to talk about Dr. Murray, Mandy Mansell, the nurse practitioner for the Neuro-Oncology Program, says she’s “surprised he is letting you do a story on him.” Mansell praises Dr. Murray as a teacher and says he’s “constantly looking to work his way out of a job by training his staff to function so well.”

Dr. Murray is fond of saying if he gets hit by a bus, his team of Mansell, Neuro-Oncology Nurse Ashleigh Hines and Kelly Rand, the team’s social worker, could step right in and do his job.

“No other team of medical providers can say that they have educational support like we do,” Mansell said. “He does trust us implicitly and values our gut instinct/experiences, because he has taught us those things. He doesn’t view himself as the leader, but more as just another member of the team. Our structure flows naturally out of this. Communication is fluid and immediate because we all contribute to the turning of the wheel in Neuro-Onc. He is constantly telling us that we don’t need him or that we ‘run the program.’ This is validating and continues to make us want to work hard.”

Communication is key for Dr. Murray. Watch him throughout the day and you’ll find him on his phone or on his computer. He’s either e-mailing his co-workers on patient care or checking with colleagues across the nation on the best way to handle a case. He’s also there for those same colleagues when they need help from him.

Dr. Murray jokes that he texts with the neurosurgeons throughout the day like they are teenagers, but adds they are in constant contact for the very serious reasons of making sure they are providing the best care possible for their patients.

“Dr. Murray has been an invaluable addition to our Neurosciences team,” said John Honeycutt, M.D., medical director of Neurosurgery at Cook Children’s. “He has spearheaded our Neuro-Oncology program. Jeff works very closely with us about each individual patient. We have continuous back-and-forth conversations, with emails and texts at the time of diagnosis and initial treatments (surgery) and after care. He readily assumes responsibility for each patient and immediately has his Neuro-Onc team start working on appointments, follow-up, treatment plans, etc. This easy communication with his colleagues allows seamless transition of care and provides personalized care for each patient and their family. Families love the thoroughness and honesty that Jeff brings.”

Linda Margraf, M.D., a pathologist at Cook Children’s, says no one goes as far as Dr. Murray to make sure everyone is kept in the loop of patient care. He doesn’t just send a piece of tissue or wait for the scan to come back. He sends as much background as possible to the pathologists to help them before they even look at the microscope.

He sends emails to Pathology to inform staff of details about an upcoming tumor surgery including the radiology findings and any significant clinical concerns. He visits the team with any special issues and when time allows, he will present patient cases at the Neuro-Oncology tumor board prior to tumor surgery so the pathologists can review the images and hear about plans and concerns of the neurosurgeons regarding the case.

“For some types of tumors (and many other conditions), knowing what the imaging studies show is quite important in rendering an accurate pathology diagnosis,” Dr. Margraf said. “His approach also improves communication between the various specialties, both during the tumor board conference and after. He always emphasizes how much Neuro-Oncology is a team effort and all caregivers, not just the pathologist, benefit from this approach. I think this truly optimizes care for the patient and family.”

Dr. Murray’s team approach and emphasis on communication includes more than physicians. On every email, he copies Rand, the social worker, and Peggy Johnson in Pastoral Care. He consistently invites team members (nurse practitioners, nurses, social workers and chaplain) to attend every formal diagnosis conference and every progression on treatment or relapse conference, as well as every end-of therapy conference.

“He trusts that everyone will bring their professional best to the table for our patients and their families,” Rand said. “He values every team member and their professional expertise, and he actively seeks out the knowledge and thoughts we each have to offer. Dr. Murray is as brilliant as he is humble. He’ll often say that our RN, Ashleigh, and nurse practitioner, Mandy, are the brains behind the whole operation. I think that shows how highly he values his team members and their hard work and commitment to our patients.”

The Neuro-Oncology team faces tough challenges every day. They treat patients for tumors in the brain, brainstem, optic tract and spine, as well as neurofibromatosis and more.

Dr. Murray admits that these day-to-day battles of life and death wear on him. He places the heartache after the death of a patient away somewhere and says he may walk around with a permanent case of post-traumatic stress disorder.

But Dr. Murray moves on and says he tries his best to put his job behind him while he’s at home with his wife and son.

“Obviously you feel for these families and certainly after I had my own child it's become more difficult as it would for anybody because you start feeling … putting yourself in the shoes of those parents,” Dr. Murray said. “Of course it's most difficult when I'm dealing with a child who is exactly the age of my child and happens to be boy like my own son. It's very difficult. I have to catch my emotions and be relatively emotion free when I'm talking to families like that. So it's gotten more difficult since I've had a child, but not impossible.

“And also except for a couple of exceptions most of these kids will be cured. They will be fixed. They may have some damage and some side effects that last a long time but most of these kids are going to be OK. I've learned a lot about the human spirit from a parent’s point of view. It is stronger than you can imagine. It's just witnessing it over and over again. Parents and families in spite of hearing horrible news are almost always able to rally and create something special for their child. Whether it's a child who is going to live or a child who is going to die, it's remarkable how families can create an environment around them to create something really good.”

Just like the Neuro-Oncology family he’s created at Cook Children’s … something really good.

#erasekidcancer

If we had one wish it would be that no child would ever experience cancer. That's why we're asking you to join forces with Cook Children's oncologists, researchers, patients and families to help make that wish come true. Click here to help.

The funds we raise together during September, Childhood Cancer Awareness Month, will support life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

Diego and Tatiana Alvarez did all those things to help their son Mirko in his battle against epilepsy in a wild adventure that began a year ago in Bolivia and brought them to Cook Children's Medical Center in Fort Worth, Texas.

Mirko, now 4 years old, has since returned with his family to Bolivia. He's walking and showing amazing progress. It's hard to believe that this little boy went through so much over the course of a year, taking his family with him through a remarkable adventure.

Down a dead-end street

Life in Bolivia is judged on a different scale than how we measure success in the United States. Minimum wage is around $280 a month. You make a decent living at about $800 and anything over $1,000 is considered great.

Diego and Tatiana lived a good life in Santa Cruz, Bolivia, raising their children - Andrey, 10, Mia, 8 and Mirko. Diego helped students learn English and competed in mixed martial arts. Tatiana drew amazing sketches and her art hung in the couple's home.

For three years, Mirko kept up with other children his own age when it came to speaking, running and playing.

Then on Feb. 12, 2016, Mirko ran a very low temperature, but nothing to get too concerned over ... at least not right away. After the fever continued for a couple of days, the family made a doctor's appointment.

The evening prior to the appointment, Diego was in the gym training for his next fight. He put his phone away, but as he was warming up he noticed it was blinking and he felt that something was going on before he picked up the phone. When he answered, he heard his mom hysterically screaming and shouting.

"Something has happened to Mirko," she said. "He's convulsing."

Diego grabbed his stuff and ran to his car. His wife called shortly after. "Mirko's dying," Tatiana cried.

Tatiana held Mirko and stepped outside their home screaming for help, Andrey ran to a neighbor's house to a neighbor, who rushed Tatiana, Mirko and his siblings to the hospital. Diego drove from training to the hospital to meet his family. The convulsions continued all over the little boy's body and his eyes rolled back in his head. The doctor on duty asked Diego to step outside.

"We are a small hospital. We can't take care of him," the doctor said. "You need to take him to a big hospital."

Then the doctor surprised Diego with a question. "Do you have a car?" The doctor explained the ambulance at the hospital wasn't dependable and a newer car would get Mirko to the hospital faster.

Diego, his sister, Mirko, with an IV in his arm, and the doctor piled into the sports car and took off like they were being chased in an action movie.

"Thank God I drove a fast car," Diego said.

The family raced through Bolivia, pounding the horn, screaming at people to get out of the way while running red lights. At one point, a traffic jam stopped the car and the doctor told Diego he had to find a way to get Mirko to the hospital because the little boy only had a few minutes left to live.

"It was terrifying," Diego said. "I was moving on instinct and desperation."

Diego remembered that another hospital was only three blocks away from where they were stopped. He hopped his car on the sidewalk, yelling at people to move. They made it to the bigger hospital's ER. The convulsions lasted for more than 40 minutes. But doctors were able get Mirko stabilized.

Treated Like a Refrigerator

Mirko always had been a daddy's boy. They share a special bond that began at birth. Diego stayed next to his sleeping son, scared of what would happen if he closed his eyes.

"I didn't even know what a seizure was until this happened to Mirko," Diego said.

Mirko woke up at the hospital and smiled at Diego like it was any other day and even asked, "Why are we here?" But any sign of relief vanished as Mirko's eyelids began to twitch again.

Mirko received thorough testing - an MRI and an EEG. The next day, Diego and Tatiana met with a neurologist at the hospital in Bolivia.

"She treated our son like a refrigerator. She was very cold," Diego said. "She said, 'Your son has epilepsy. Give him this medication. I'll see you in three months.' We had so many questions. 'What can he eat?' 'What can he drink?' 'What happens the next time he has a seizure?' 'Will he have a normal life?' 'But we never got the chance to ask anything."

White Spots on the Brain

The MRI scan of Mirko came back, showing "white spots on his brain." A neurologist told Diego that his son could have leukodystrophy, which shows up in the white matter of the brain on scans. Diego looked up the disorder online and his heart plummeted into his stomach. If he had leukodystrophy, Mirko possibly faced loss of motor function, muscle rigidity, the loss of sight and hearing and eventually death."

"I cried a lot," Diego remembers. "It's the worst you could hear about your son. He's going to die. I was never an alcoholic. I never did drugs. I didn't smoke. Neither did my wife. We lived such healthy lives. But we couldn't help but wonder if it was somehow our fault."

Fortunately, Mirko's parents wanted a second opinion. They found a neurologist who told them their son didn't have the fatal disorder. The white spots were likely a result of the MRI machine being so old at the previous hospital.

While that news was good, it only proved what Diego and Tatiana already knew. They weren't getting the best care possible. They would have to go elsewhere to find any hope for Mirko.

A Game of Chance

Their new neurologist told Diego and Tatiana their son wasn't going to die, but he needed surgery to control his epilepsy. Mirko needed surgery to remove the portion of the brain causing the seizures and he needed it fast.

Mirko's seizures came often - 20, 40, 60 seizures or more a day. He lost his quality of life and their happy little boy was losing himself to epilepsy.

"I was tortured," Tatiana said. "I would count the seizures every day. The amazing thing was after every seizure, Mirko would still smile. I read a Facebook post by a dad who said to count the smiles and not the seizures. That changed everything for me. I now saw more smiles than seizures."

Diego and Tatiana were desperate to find help for their son.

Diego's father, Javier, told his son they would find the best place in the world for their son. Somehow, they would find the money to make this miracle happen.

Mirko's parents searched online and researched to find the right hospital for their little boy. They found hospitals in Chile, Brazil, Miami, New York and Houston. They narrowed their focus to a children's hospital in Miami. The soonest they could see him was three months.

But as Diego frequently says, "God has his ways."

During the turmoil of trying to find a place to help his grandson, Javier went to play billiards with friends to distract him from the real world for a little while.

A friend could see something was bothering him and asked what was wrong. When Javier told the man Mirko's story, the friend told him about his niece's child who had a serious neurological disorder. He described to Javier about a place in Fort Worth, Texas called Cook Children's. After being seen at Cook Children's, the family had actually moved to Fort Worth to be near the doctors. That's how much the place had meant to them.

"He told my dad that lady had been all over the world. All the same places we'd been looking at too. But the woman said she couldn't find any treatment for her son until they came to Cook Children's," Diego said.

That evening, Javier talked to his friend's niece about Cook Children's. The following day Javier connected Diego with the woman and they spoke for more than two hours.

"She really convinced me," Diego said. "I felt it. I felt this was the place. We had to get to Fort Worth."

Diego called Cook Children's and was connected to Yadira Nunez, International Business Development liaison. He told her his story and that a neurologist at Cook Children's, had taken care of a family friend's son. Nunez was in Mexico for a conference with a neurologist and put Diego on the phone with the doctor.

Within a matter of hours, Diego and Tatiana booked an appointment that would have them arriving in Fort Worth in less than two weeks.

Sell Everything

With an appointment made, the Alvarez family now had to pay for their trip. Javier bought the plane tickets for Mirko and his parents. The need for money called for drastic steps. On Dec. 5, 2016, Diego spent his birthday selling nearly everything he owned to provide care for his son; and the rest of the family also sacrificed their belongings.

"Thank God Diego's father was there to help and made everything possible," Tatiana said. "Diego always says, 'My dad is our guardian angel.'"

Diego, Tatiana and Mirko arrived in Fort Worth on Dec. 6, 2016. They spent Tatiana's birthday, Mirko's birthday, Christmas and New Year's Day at Cook Children's - all away from their two other children.

Their older son and daughter were heavily impacted by Mirko's condition. Not only were they away from their parents for more than six months, but they had to withdraw from private school.

"Private schools are so important in Bolivia," Diego said. "Public schools there aren't good. You can't get the same education, plus they are insecure. There are kidnappings at the other schools."

Diego's mom went with her grandchildren to the school and stayed there until the end of the day so the kids wouldn't be left alone.

Dump Truck

At Cook Children's, the Comprehensive Epilepsy Team took over the day-to-day care of Mirko as he was admitted to the Epilepsy Monitoring Unit once he arrived. Within 11 hours, he experienced 40 seizures.

"We evaluated Mirko and struggled a bit with the actual reason for his epilepsy, but ultimately decided a large resection of his frontal lobe would be the best answer to help him without hurting him," said Scott Perry, M.D. medical director of Neurology. "We also knew this initial resection may not be adequate, but wanted to try to preserve as much of his brain as we could."

On Feb. 2, 2017, David Donahue, M.D., a neurosurgeon at Cook Children's, performed the surgery on Mirko to remove his left frontal lobe. While the Diego and Tatiana found previous doctors cold, they found themselves being listened to and informed at Cook Children's. Both Diego and Tatiana refer to Dr. Donahue as the "sweetest."

Following surgery, doctors prepared Diego and Tatiana for the possibility that their son may not speak because speech was in the area removed. But when he came out of anesthesia, Mirko looked at his parents and said two simple words typical of many little boys.

"Dump truck."

It's believed that the brain, being the amazing organ that it is, already was using the healthier parts on the opposite side to shift his speech. The other fear was that Mirko would be paralyzed on his right side. But soon after surgery, they noticed while sleeping Mirko moved his right arm and leg.

Diego and Tatiana hoped that the surgery would end Mirko's seizures. While they weren't every day, Mirko still had seizures, although not the severe ones that had been so devastating. The neurological team held out hope that the surgery would eventually end the seizures altogether.

And Diego and Tatiana waited for things to return to how they used to be.

You Can't Go Home ... Yet

Following the initial surgery, Diego, Tatiana and Mirko planned to go home to Bolivia. They had received help and Mirko's seizures weren't as severe and easier to control.

But that wasn't good enough for the Epilepsy Team.

The team knew that the same quality of health care wouldn't be waiting for Mirko in Bolivia and he wasn't responding well enough to medications to control his seizures. They felt it was it was in Mirko's best interest to have one more surgery.

"It was difficult to tell Mirko's family that another major surgery was needed. But we felt under the circumstances, a second surgery was required to establish a better quality of life for Mirko once he returned home," Dr. Perry said. "It was really his only hope at that point."

While the first surgery removed Mirko's left frontal lobe, a few weeks later the second surgery disconnected the entire left hemisphere from the right side of his brain.

After the surgery was performed Mirko developed a blood clot in his brain and the family stayed in Texas for two more months to treat it. Mirko required six blood thinner shots a day for those two months and took them "like a warrior he is." After the blood clot was gone, it was finally time to return home. Mirko and his parents arrived in Santa Cruz, Bolivia on May 26, 2017, just one day before Mother's Day. They celebrated the holiday and Mirko's health six months after their adventure began in Texas.

The surgery and treatment was a success. Mirko is now seizure-free. His mental faculties are intact and he is able to speak. Physical therapy helped Mirko regain the right side of his body and he is now able to walk.

"We used to have a normal life," Tatiana said. "We would go to the cinema. To the mall. We had a normal family. A year later, everything changed because of epilepsy. We have a normal life again now. We are just so thankful to God for Cook Children's and everything they have done for us. We really are."

After all, what's a great adventure without a happy ending.

Celebrating Cook Children's Centennial

Cook Children's is turning 100 and will be celebrating all year! Don't miss out on the fun throughout 2018. Enjoy unique stories, parades, special guests, and community events across Fort Worth. We hope that you can share in some our celebrations because you're the 1 in our 100!

Celebrate with us

For most of the first 20 years of his life, Michael Jankowiak never played ball or even owned a toy. His debilitating cerebral palsy wadded his fingers into a tight fist. He barely moved his hands, except to drive his electric wheel chair.

Then, during a visit to his neurologist, every changed. During a BOTOX® session at Cook Children’s, Fernando Acosta Jr., M.D., a neurologist at the Jane and John Justin Neurosciences Center, told Michael's mother, Lynn, that a surgeon on staff could possibly make a big difference in her son’s life.

Lynn was told Pamela Sherman, M.D., performed surgeries on children with disabilities. 

The original intent of the surgery was to help children clean the palms of their hand and aimed at improving hygiene for patient with significant contractures (the permanent tightening of muscles, tendons ligament or skin that results in a loss of motion in the affected joints).

But the sides effects were, as Lynn puts it, “pretty remarkable.”

Patients who need this surgery often demonstrate limited function with the contracted limb preoperatively. Things such as the ability to trim finger nails, avoid skin breakdown in the palm or elbow and the ease of nursing care with dressing, bathing and transferring to the wheel chair are the focus of surgical intervention. 

"Placing the upper extremity in a more functional position and releasing contractures often has a wonderful added benefit of improving use,” Dr. Sherman said. “Suddenly, the patient with previously limited spontaneous use of their limb has a hand that they are able to use to push a wheelchair control, use a communication board or hold an object.  A little goes a very long way for them.”

For the first time since he was a baby, Michael, who is now 24, opened up his left hand and played with a toy. Michael even held his own glass and brought it to his mouth to take a drink.

“This surgery has given him something new with his life,” Lynn said. “He has never been able to find a toy that he could play with. We took a golf-sized rubber ball. It’s elastic and put a rubber band on it. It looks like it came out of a gum ball machine. But when he’s playing with it, he grins from ear to ear. He can now even hold the ball and drops it for the dogs to play with him.”

After receiving a second surgery on his right hand that summer, Michael could now play on his iPad. He can swipe and select different videos to watch on YouTube.

What may have seemed so routine to most families has been nothing short of a miracle to Lynn because of how far her son has come.

Lynn described her first few months after she learned Michael had cerebral palsy as “fuzzy.” She lived in a terrified blur of emotions and cried for the first year after learning of his diagnosis.

But through her tears Lynn kept her resolve, beginning with one decision – Michael would be transferred from the family home in Abilene to Fort Worth to be treated by Cook Children’s. They then moved to Fort Worth to stay closer to Cook Children’s.

“To see your baby crawling, trying to learn to walk and then all of a sudden he’s not moving, was horrible,” Lynn said. “We insisted he be transferred. If he had not gotten transferred Michael would not be alive. I believe that with all my heart. I would not go anywhere else.”

The first month he stayed in the Pediatric ICU. Since then Michael has been seen by a plethora of specialties at Cook Children’s including Infectious Disease, Neurosciences, the Heart Center, Radiology, Surgery and Rehabilitation Services for issues ranging from pneumonia to cerebral palsy.

Michael stopped moving his extremities at 18 months and was diagnosed at that time.

Mark Shelton, M.D., was the physician on-call the day Michael first arrived at Cook Children’s. Dr. Shelton, a member of the Cook Children’s Physician Network, continues to be Michael’s primary care physician.

“Dr. Shelton, even though he is a specialist, I want him involved in everything,” Lynn said. “I trust him completely. I honestly think Dr. Shelton saved Michael’s life. He’s wonderful and so is his entire staff. He has such wonderful nurses. But all of Cook Children’s has such great nurses.”

Medical Director of Orthopedic Services David Gray, M.D., has also been there for Michael through multiple operative procedures associated with cerebral palsy.

“Dr. Gray is amazing. I remember him when he joined the Cook Children’s staff,” Lynn said. “A few years ago Michael broke his femur. When the ambulance came I told them I wasn’t going anywhere but Cook Children’s. Dr. Gray wasn’t on call that day, but somehow they got in touch with him and Dr. Gray managed to be there when we needed him.”

And now even today, after all this time, Lynn believes Cook Children’s works miracles for her son.

“It’s really the entire system,” Lynn said. “Everybody works so well together. It’s one of those places. I remember how I felt from the first time I walked in at 2 in the morning. It’s just comforting. You knew you were going to be treated well and your child was going to be taken care of by everyone.”

The Epilepsy Foundation describes SUDEP as “the sudden unexpected death of someone with epilepsy, who was otherwise healthy.” No other cause of death is found when an autopsy is performed following SUDEP.

Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. While those numbers show how rare SUDEP occurs, the Epilepsy Foundation calls SUDEP the leading cause of death in people with uncontrolled seizures.

Currently physicians don’t have a way to predict or prevent SUDEP. The criteria to classify a death from SUDEP include:

• Patient suffers from epilepsy
• Death occurs suddenly
• Death is unexpected, while the patient is in reasonably good state of health
• Death occurs during normal activities
• No cause of death determined by autopsy
• Death is not a direct result of a known seizure or status epilepticus (but may occur following a seizure)

Some in the medical community fear that discussing SUDEP will raise anxiety in patients and families without reason, said Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s.

“But I think it’s our responsibility as physicians within the medical community to make people aware of this rare condition,” Dr. Keator said. “We have seen studies that show patients and families want to know the risks they face.”

While the causes of SUDEP aren’t known for sure, SUDEP happens most often at night. Experts believe it may happen when there are problems with breathing, heartbeat and brain function after a seizure.

“Right now, most experts believe the best way to prevent SUDEP is through good seizure-management control. For people with poorly controlled seizures, the risk of SUDEP is much higher. It’s 1out of 150 each year,” Dr. Keator said.

Seizure management control means:

• Taking medication on time, every day – exactly as prescribed.
• Keeping a healthy diary of seizures, test results and asking questions of your doctor.
• Knowing your seizure triggers such as not getting enough sleep or feeling stressed.
• Creating and sharing your seizure response plan with others.

“It’s important for family, friends and caregivers to be informed of what to do during and following a seizure,” Dr. Keator said. “This includes knowledge of the recovery position and cardiopulmonary resuscitation techniques. Also, people need to know they should call an ambulance if the seizure lasts for more than 5 minutes or repeats without full recovery. It’s also important that people do not leave someone who has had a seizure for at least 15 to 20 minutes after the seizure to ensure that recovery continues.”

To learn more about SUDEP, click here.

When Scott Perry, M.D., an epileptologist and medical director of Neurology, talks about his patients, the one word that comes up over and over again is “story.”

“Because every kid’s epilepsy is different,” Dr. Perry said. “They might fall into broad categories, but even in the broad categories, there are differences. Even people who have a well-defined syndrome aren’t going to be exactly alike.”

Dr. Perry compiles tons of data, research and examination on each of his patients to find out about that child’s story.

He says each kid will tell his or her story over time. But first the epileptologist needs a lot of history and information for that patient:

• The age that the child’s first seizure started.
• What the child was like before having the first seizure.
• The types of seizure they’ve had.
• How the seizures evolved (Are the seizures the same every time? Have they changed in some way? Has the number increased?).
• The child’s EEG findings.
• The MRI findings.
• Was the child healthy before seizures? Did the child have developmental delays or health problems
• How has the child responded to treatments?
• How has the child changed over time?

“It’s like a constant flow chart or a computer algorithm,” Dr. Perry said. “All of these pieces are coming in and you are connecting them. You narrow it down and it’s this. But you get more tests and now it’s this. Sometimes you arrive at what you think it is and then things change and you go, ‘I was wrong. It’s not this. It’s this.’”

To treat a child’s epilepsy, the epileptologist plays detective much of the time. The doctor is looking for that one clue or fact that will help determine the best possible treatment for the child. For some kids, it means a trial and error of many different medications before success. For others, it may eventually mean surgery.

“You are looking for that child’s story. When I’m hearing the history of that child, I’m looking at the type of seizures. Every part of the brain does something different. If I can understand a seizure from the beginning to the end and the sequence of events of that seizure, I can get a better idea of where it probably starts and then spreads to different places. Some of these changes are incredibly subtle on an MRI. You might have an MRI that was read stone cold normal and to be fair, it probably looked that way. But once you have more information and that child’s story, you might see there was something there that wasn’t obvious when you were looking at the entire brain.

“With every piece of that story, you can get a better diagnosis.”

​

Despite those numbers, so much mystery still remains about this neurological disorder that can affect people of all ages.

Many misunderstand the disorder which, in turn, results in social isolation, stigma and fear.

So let's take a closer look at epilepsy with Scott Perry, medical director of Neurology at Cook Children's.

First of all, people are diagnosed with epilepsy after recurrent seizures or, in some cases, when testing indicates a high likelihood of seizure recurrence after a single seizure. Those seizures come in many forms, degrees of severity, and duration.

"We often don’t diagnose epilepsy after one seizure," Dr. Perry said. "First we have to determine if a seizure was provoked by something, for example low blood sugar, versus being unprovoked. If the seizure is unprovoked, you can be diagnosed if you have two or more seizures or if you have one seizure with testing that suggests a significant risk to have more."

So a single seizure is not a guarantee of epilepsy diagnosis. If your child has a seizure from a cause which is isolated or reversible such as low blood sugar, high fevers or a head injury that child most likely will not have another one and usually doesn't end up with a diagnosis of epilepsy.

Typically, if a person has a single seizure and the EEG is normal, the risk of further seizures is low enough that starting daily medications for seizure treatment is not necessary. However, if a person has more than one unprovoked seizure, the chances additional seizures will occur is higher and medications are often recommended regardless of EEG results. Similarly, there are situations in which the EEG is significantly abnormal after a single seizure such that the benefits of starting medications outweigh the risks of waiting for additional seizures to occur.

Treating epilepsy

Finding the right medication and right dosage of medication to help a patient with epilepsy can be a difficult task for an epileptologist.

"Parents are familiar with the scenario of ear infections. You take your child to a pediatrician and you receive an antibiotic, go home, take it for 10 days and you are done," Dr. Perry said. "It doesn't work that way for seizure medicine. We start at the lowest dose that's known to be effective. We take that from the studies that have been performed that got the drug approved in the first place. That same dosage probably won't work for every single person. It doesn't mean the medicine doesn't work, it just might mean it's not the dose for this individual. We have to take it up to the next step to see how the child will do on that one.

"The child might still have a seizure on that dose and you have to take it up another step. So that gets a little frustrating for the parents. 'Why didn't you give the right dose the first time?' The answer is because the child might not need 60 miligrams per kilogram, you might respond to 20. Why would you give three times as much medicine as you need? It's our job to figure that out, but that process can be frustrating."

About 60 percent of people will be seizure free on the first drug they try, while another 15% will become seizure free on a second drug if the first fails. On average, two-thirds of patients will be seizure free with medication.

If your child still has seizures after the second or third medication tried, it's less likely that subsequent medications will be fully effective. In this case, more complicated treatments may be recommended or tried. These include:

• Combinations of medications
• A ketogenic diet (a high-fat, low-carbohydrate, low-protein diet)
• Implantation of a vagal nerve stimulator (an electrical pacemaker-like device placed in the chest and neck)
• Surgery to remove the affected part of the brain, if possible. In the right situation, epilepsy surgery can be very effective or may even cure a child of seizures, but overall it is done in less than 10% of epilepsy patients, and only after an extensive screening and evaluation process.

"We want kids to have as normal a life as they possibly can, understanding it's not going to be perfect because you have to take medications every day. You've got an unpredictable disorder that can jump on you at any moment." Dr. Perry said. "Our goal is to achieve seizure freedom with zero side effects. That is not always possible, but it should always be the goal.”

But it was one of the people who could not be at the event that was the cause for celebration. Kelley Pettit spoke to the group in attendance and let them know that her son Cole would not be attending for all the right reasons.

“I wish Cole was here to tell you thank you from the bottom of his heart, but the reason he’s not here is because he is a sophomore at Texas Tech University,” Kelley said. “I wish you could know how amazing that truly is because there was a time that graduating from high school was not a certainty. There was a time where driving a car was not going to happen. A time where going to college was out of our reach.”

There was a time when the Pettit family wasn’t given much hope for their son. Cole, who is 19 now, had his first seizure at the age of 5. For 10 years, Kelley said her son struggled with seizures and that meant he struggled in school. He was constantly fatigued. Epilepsy hurt his ability to interact socially with friends. His self-esteem suffered.

Cole went through nine different medications that all failed and three different doctors, “who all told us the best we could do was just keep changing medications” Kelley said. Cole’s epilepsy became more debilitating as he reached 12 to 15 seizures a day.

Kelley says the turning point happened when she went to an event sponsored by the Epilepsy Foundation. The speaker that day was Angel Hernandez, M.D., who was a neurologist and epileptologist at Cook Children’s at the time.

She spoke to Dr. Hernandez about her son’s condition and he gave her hope that maybe something could be done for Cole. Kelley, who lives in Dallas, drove to Fort Worth for Cole to receive a full battery of tests. The test results showed that Cole could receive surgery.

David Donahue, M.D., a neurosurgeon at Cook Children’s, resected the part of Cole’s brain causing the epilepsy. That was four-and-a-half years ago and Cole hasn’t had a seizure since the surgery.

“I can’t thank you enough for the good work you are doing here. It’s absolutely a miracle,” Kelley said. “We’re very, very blessed. We appreciate you so much. Keep it up. Keep changing lives. Thank you for giving me my kid back. His life is so different now than where we were headed. We really didn’t think we would have this opportunity. From the bottom of my heart, from me, my family and my son, thank you.”

1 in 26

Cole is 1 in 26 people in the world who will develop epilepsy at some point in their lifetime. That’s greater than the number of people with autism, Parkinson’s, multiple sclerosis and cerebral palsy combined. Sixty-five million people in the world live with epilepsy.

A third of those people have uncontrolled seizures and for 6 out of 10 people with epilepsy, the cause is unknown.

“Despite the staggering numbers, epilepsy remains a diagnosis few people talk about," said Scott Perry, M.D., medical director of Neurology and co-director of the Jane and John Justin Neurosciences Center. “Many misunderstand the disorder which results in social isolation, stigma and fear. Furthermore, the money dedicated to research in epilepsy pales in comparison to funds spent for disorders which are much less common. It is our duty as health care providers in Neuroscience, to help eliminate epilepsy and we do this by increasing awareness.”

Cook Children’s community has come together to support epilepsy awareness throughout November. Starting Nov. 1, the medical center will be lit in purple to signify the dedication to raising awareness. Employees will be wearing purple or one of two epilepsy t-shirts they designed to spread the word of how common of a disorder epilepsy is.

Weekly educational lectures are planned for parents, family members and patients with epilepsy covering topics of interest and demonstration for the public on seizure safety and first-aid.

While many people may have just recently heard of KD, it’s long been a treatment for some children with uncontrollable seizures. These are children who have found little or no relief after failing multiple seizure drugs and treatment methods. With the KD, there are many children who have achieved dramatic reduction in their seizures.

So what is KD exactly?

When used for our epilepsy patients, it is based on a specific ratio of fat: protein + carbohydrate. For example, 3:1 and 4:1 are frequently used KD ratios which means that 75 to 80 percent of the patient’s total calories are coming from fat! This is what is known as the classic ketogenic diet.

This means that for every 3 or 4 grams of fat in the diet, there is 1 gram that is a combination of protein and carbohydrate. Families whose children are placed on the KD are given a specific meal plan for their children. Each meal and snack consists of a combination of food items in specific gram amounts that will yield the prescribed diet ratio.

The KD diet is recommended for specific neurology and epilepsy patients. Good candidates for the diet include patients with seizures that are intractable to drug therapy and patients with metabolic disorders of carbohydrate metabolism, specifically Glucose-1 transporter deficiency syndrome and Pyruvate dehydrogenase deficiency syndrome. There are some medical conditions that make the KD dangerous, such as defects in beta-oxidation, carnitine deficiency and porphyria.

“The ketogenic diet is predominantly used in our patients with intractable epilepsy, specifically those with infantile spasms and Lennox-Gastaut Syndrome,” said Cynthia Keator, M.D., a neurologist and the director of the Ketogenic Diet Clinic at Cook Children's. “ The children are hospitalized to initiate the diet due to possible severe adverse effects (described below). The method on how the diet works is by the by the brain being forced to use ketone bodies (the by-products of fat/lipids) as a fuel source instead of carbohydrates (which is usually the main and quickest primary source of energy for the human body). By using ketones bodies as fuel, this may decrease some patient’s seizures. To date, the mechanism underlying beneficial effects of the Ketogenic diet remain a mystery.”

Unfortunately, about a third of patients do not respond to the ketogenic diet. When the diet does work, however, patients can experience 50 to 90 percent seizure reduction. If seizures improve from being on the diet, some patients can have their medications decreased, however, total elimination of all seizure drugs in rare.

Children usually spend no more than two years on the diet, either because it can be successfully tapered off, it fails to work, or due to the risk of long-term side effects including osteoporosis, elevated triglycerides, kidney stones, constipation, nausea, vomiting, pancreatitis, anemia, and rarely prolonged Q-T syndrome.

At Cook Children’s, the patients are monitored by an experienced team of epileptologists, led by Dr. Keator. The children placed on the diet are offered:

• Counseling and initial monitoring at a tertiary care center.
• A full staff of nutritionists, counselors and other support staff.

So should this diet that’s taken so seriously at Cook Children’s be a part of a summer weight-loss program for parents or kids who are just looking to shed a few pounds?

“The ketogenic diet can be helpful under certain circumstances, but it is not a diet for everyone,” said Jessica Holy, a clinical dietitian who works with the neurosciences at Cook Children’s. It should also be noted that the diet used for our neurology patients is the classic ketogenic diet described by a 3:1 or 4:1 ratio of fat: protein + carbohydrate. The KD making news today that is being used in the general population is not as strict and is closer to a 1:1 ratio. “The classic ketogenic diet at the 3:1 or 4:1 ratio is not medically recommended for the general population due to its adverse effects and possible nutritional deficiency which is dangerous,” states Dr, Cynthia Keator, “however a modified version, closer to a 1:1 ratio, with the aid of a nutritionist and your primary doctor can be accomplished for weight loss and health concerns.”

For anyone just starting the diet, low blood sugar is common. But for children not being monitored by the neurologists at Cook Children’s, the ketogenic diet comes with other concerns.

“We order a glucometer and testing supplies for our KD families so they can test their children’s blood sugar at home and the amount of ketones in the urine,” Holy said. “For both small children and teens, a concern would be inadequate intake of a number of vitamins and minerals that are found in regular portions of fruits, vegetables and grains, all of which are very limited on a KD. Another concern for both groups would be kidney stone formation. When the body maintains a state of ketosis for weeks or months, the balance of acid and base in the blood is disrupted. This can place a person at risk for kidney stone formation, especially if fluid intake is inadequate.”

Holy said the growth of younger children could be slowed though use of the KD due to vitamin and mineral deficiencies, insufficient calorie and/or protein intake and acidosis that is left untreated. The KD does not provide adequate amounts of calcium, so younger children are at risk for poor bone development and teens are at risk for bone loss.

“If families are not trained on what to look for and monitor, some of these side effects can have serious medical consequences,” Holy said. So how do you go about trying to make dietary changes and be “keto friendly” without causing dietary concerns?

Instead of focusing on eating, Holy suggests parents help their child find a way to be more active before tackling a diet.

“When you start to move more, your endorphin production goes up and you start to feel better. This can lead to a natural desire to make better food choices,” Holy said. “I think a reasonable way to approach a low-carbohydrate lifestyle is to, first, try to eliminate all sources of concentrated sugar. This includes obvious things like candy, cakes, cookies, pies, soft drinks and juice drinks, but also check food labels of processed foods.”

Holy recommends parents monitor how much sugar is in their child’s favorite cereal or breakfast bar. Many flavored yogurts are high in sugar.

Next, try to prepare more foods at home and limit visits to fast food restaurants. Think about meals that have a vegetable as the main dish with a side of protein and a small portion of a carbohydrate. Incorporating sources of healthy fats into the diet can add great flavor and keep you feeling fuller longer. For example, use olive oil as a salad dressing or drizzle it over cooked vegetables; have half of an avocado with a meal or for a snack; add nuts and seeds to salads or have a handful as a snack.

These smart choices can make for healthy lifestyle choices that last a lifetime and not begin a life-long trend of following the latest diet fads.

About the Jane and John Justin Neurosciences Center

When a medical condition interrupts your child's life, it can be scary, especially when it's related to the brain and nervous system. If your child is diagnosed with a neurological disorder or disease, it may ease your mind to know that our neurosciences department is one of the largest and most respected in the southwest. Click to learn more.

What Is Dravet Syndrome?

Dravet Syndrome is a rare genetic epilepsy (1 in 25000) that begins in the first year of life with seizures in the setting of fever. Unlike typical febrile seizures, children with Dravet syndrome often seize every single time they have fevers.

They may also seize when they have mild elevations of temperature, for instance, after taking a hot bath or after being outside on a hot day. They are normal developing and healthy in that first year of life, despite the fact they have frequent febrile seizures. These seizures can be very long lasting, 30 minutes or longer.

Their initial seizures are often characterized as hemiclonic seizures, so they’ll be seizing on the right side of the body at one time and the next time they come in, it’s predominately on the left side. After the age of 1, they begin to have seizures in the absence of fever. They have multiple seizure types at that point including absence, generalized tonic clonic seizures, atonic seizures and tonic seizures. The seizure frequency often increases, their EEGs become progressively abnormal and the children themselves can have a stagnation in their development or even a decline in development as the epilepsy progresses.

In the first 10 years of life or so, seizures can be quite frequent and very difficult to control. Generally after that time the seizures slow down, but will still occur throughout life.

What are the current treatment options of Dravet?

The mainstays of treatment of Dravet syndrome are medications. The first being valproic acid (Depakote), another clobazam (Onfi), and another one called stiripentol. Beyond those three primary medicines, there are other medications that can be used with variable success in addition to dietary therapy and recently, medical cannabis or cannabidiol, has shown some promise.

Importantly, there are medications that are used to treat epilepsy that should not be used to treat children with Dravet syndrome. Those are medications that work on the sodium channels. Because the syndrome is a disorder of sodium channels, using medications that work on sodium channels actually makes these kids much much worse. Carbamazepine, Oxcarbazepine, and Lamotrigine are a few of the medicines that work on sodium channels that should be avoided in children with Dravet syndrome.

Does that happen often? That people put these kids on those medications?

Unfortunately, yes. Because those medications are typically used for focal onset seizures and when these kids first present they are having focal seizures people treating them logically say, "Well let’s put them on oxcarbazepine." When these kids get worse the next logical reaction to that is that they say, “Oh they are worse. Let’s give them some more. They must not have enough.” Then they get even worse. That’s actually one way that some of these kids get diagnosed. People recognize that these sodium channel drugs made them much worse, so maybe they have a sodium channel disorder.

I have been guilty of making this mistake. So even in my immense knowledge of this disorder, I have made this mistake.

What impact does Dravet have on the entire family?

It’s interesting that you bring that up because we actually did a project with the University of Washington in Seattle about caregiver burden of caring for Dravet Syndrome. We developed a scale that they are in the process of standardizing for clinical use. These families have difficulties caring for their other children because they can’t spend as much time on the activities of the other kids because they spend so much time focusing on the health care and safety of their kid with Dravet syndrome. Jobs, it’s difficult for both families members to hold down a job because somebody usually has to stay with the child. I imagine it’s difficult for the parents themselves to get much time with each other because one is probably up most of the night worrying about their child, while the other one is up most of the day. The amount of time lost from work and other obligations, community obligations, etc. caring for the child is pretty significant.

And it impacts the siblings too, right?

Exactly. They may not get to do all the things that they want to do. Or if they do get to do those things, if they do want to play baseball, maybe the family can’t take them to baseball all the time. So it’s your neighbors taking them. The parents can’t be there because they are at the doctor or the hospital.

What are some of the advancements that have happened in the care of patients with Dravet and what do you see for them in the future?

Dravet represents one of the best understood epilepsies since we know the genetic mutation that is the cause of the epilepsy. So that’s a really important thing. Understanding that has allowed us now to understand more about why it happens and hopefully get to a point where we understand how to treat it. People with other epilepsies or other genetic epilepsies should appreciate and support research that goes into Dravet syndrome because if you can figure out the genetic cause of one and figure out how to fix it, there’s a decent chance we might apply the same thoughts to other things and figure out how to cure other epilepsies down the road.

As far as big things that are going to come in the Dravet world … One thing is that pharmaceutical companies have increasingly recognized the importance of this syndrome, which is why you have multiple new pharmaceuticals being evaluated. Cannabidiol one. Fenfluramine, the other. Both trials we’re doing here. Some drugs being used in other syndromes are also being considered. The drug being used in muscular dystrophy that skips over the abnormality in the gene that causes the disorder to help make a more normal gene, they are looking at applying the same kinds of ideas in Dravet syndrome. If you could somehow skip over the abnormality in the SCN1A gene and make a more functional protein, might we be able to improve the disorder? Maybe? So those are some of the exciting things.

Several new drugs are probably going to be investigated in the future. They've got animal models that they can test drugs on to see which ones might be favorable and investigate it more. I mean who would have ever thought to look at fenfluramine. It was just part of a diet pill in the past. Somebody was smart enough to think, "Well maybe half that drug might be worth something. Let's go look at it." It appears to be very effective. At least in the open trials they've done.

What made you interested in Dravet Syndrome?

Really it was in training, in my residency ... I've always been fascinated with epilepsy and fascinated by the story of epilepsy. I've always been fascinated by the idea that the longer epilepsy goes on the more likely the story might actually be told. Which is why I always harp with my students that when you have a patient with intractable epilepsy, if you do not understand what's going on, you should always start from the beginning and work your way to the present because you might find a pattern and see the story as it's told over and over and over again.

Dravet is one of those things that tells a story over time. So in the beginning when it's just febrile seizures people might not quite put it together. But you take febrile seizures and then the types and how long they are and then put that you've got these new types of seizures. Now you've got developmental delay and EEG abnormalities, over time the story becomes clear.

I found so many cases of Dravet when I was in training in kids that were diagnosed with other things. There was a kid I remember when I was in training that was about to get epilepsy surgery, and this has actually happened multiple times since then, where I've seen people who were in the process of getting evaluated for epilepsy surgery and doctors are going over their history and trying to figure out if the patient was a surgical candidate. This kid sounds like he has Dravet syndrome. They are 14 or 15 years old and their family is wanting to do a surgery and then we find out, no they've got this underlying genetic epilepsy that is not surgically treatable. It's an important thing to figure out.

So over time I have encountered more and more kids with Dravet syndrome. We probably see somewhere between 40 and 50 patients. The longest distance someone came to see me was from Florida. There are a couple of spots in the US where Dravet syndrome is frequently treated and these typically develop from a doctor interested in the syndrome and word of mouth from the Dravet community. It's a very connected community. A group finds a doctor they like who understands what's going on, they share that with everybody and they end up all trying to go to the same place. It makes for a better clinic and better care when we can have that connection with our patients and they are connected with each other.

For more information:

• Jane and John Justin Neurosciences Center
• Dravet Syndrome treated at Cook Children's
• Cook Children's Comprehensive Epilepsy Program
• Contacts and Locations

What is Deep Brain Stimulation Surgery?

Deep brain stimulation surgery involves two parts: implanting electrodes into the brain and a pacemaker under the skin of the chest. The two devices are connected by the surgeons and electrical impulses are sent from the pacemaker to the brain to correct the abnormal impulses of the movement disorder. The two surgeries take place about a week apart from each other. Following both procedures, the child usually goes home the next day.

The Path to Asleep DBS

When neurosurgeons at Cook Children’s first began performing DBS, patients had to be awake. Now, thanks to enhanced technology, patients can be under anesthesia and asleep. This change in the treatment’s technique came with the addition of an iMRI, which is essentially a giant magnet, at Cook Children’s. The iMRI allows neurosurgeons to have pinpoint accuracy while performing a delicate brain surgery.

“With all the technology we have, I know I am in the exact spot I want to be," said John Honeycutt, M.D., medical director of Neurosurgery at Cook Children’s “My accuracy for DBS is 0.5 millimeters."

Dr. Honeycutt is one of the world’s leaders when it comes to using DBS on patients with dystonia and will perform the hundredth surgery. It will be the fifteenth asleep surgery for Cook Children’s.

Building a DBS Program

Prior to 2003, DBS was done almost exclusively for Parkinson’s disease and tremors. Then, the Food and Drug Administration (FDA) allowed for DBS to be done on patients with dystonia, beginning at age 7. At that point, most hospitals weren’t doing the surgery on children.

Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s, says Cook Children’s DBS program grew as part of an evolution of the movement program at the medical center.

Dr. Marks said it took two years of hard work to develop the DBS program at Cook Children’s. It involved assembling and organizing two entire teams – one to do the evaluations and postoperative management and another to do the surgery.

Cook Children’s performed its first DBS surgery in 2007.

“We have slowly and methodically grown the program so we try and do it in the best way we can and try to provide for the most kids we can,” Dr. Marks said. “The program is somewhat unique in that we are really focused on children. When we started our program there was no adult program to work off of. Virtually all DBS programs where surgeries are performed on children are in conjunction with adult programs. We didn’t have an adult program to work off of. We really did start from ground zero.”

The Road Ahead

Both Dr. Honeycutt and Dr. Marks take the hundredth procedure in stride. The milestone reinforces their success, but they say they never looked at this program as a race. They have been very careful in their approach to the surgeries and the patients they are treating.

What excites them is the fact that the last 15 cases were performed while the children were asleep.

Dr. Honeycutt says it can be a traumatic event for the kids to go through surgery awake, even after the efforts to keep them pain free while awake in previous surgeries. So with the advent of iMRI guided system, he saw the opportunity to perform the surgery on children who were asleep.

There will still be some surgeries where the patient has certain disorders that will require him or her to be awake. But for the most part, the surgeries will be done with the patients asleep.

*Illustrations/Graphics courtesy of Clearpoint.

Today, Dr. Marks looks back at that time as “an interesting diversion,” but it really helps explain who the man really is. After all, he’s built one of the nation’s most highly successful comprehensive clinical centers for pediatric movement disorders.

Dr. Marks, who is one of the first two Endowed Chairs at Cook Children’s, has molded a program where Cook Children’s deep brain stimulation serves as the centerpiece.

Most recently, Dr. Marks has seen the end of years of work with the addition of Cook Children’s Motion Lab, which sees children, teens and young adults who have a variety of complex movement disorders, including cerebral palsy, dystonia and traumatic brain and spine injuries.

He just keeps on adding to a legacy where he has brought together the most advanced technology with a kid-friendly atmosphere.

When he was a kid, Dr. Marks loved science and became fascinated with the brain and how it works. When he entered Texas Christian University, Dr. Marks considered a career in chemistry, earning a Bachelor of Science degree from TCU, and then he took that year to pursue architecture.

But once he entered Texas Tech University School of Medicine, Dr. Marks’ life’s work began to take focus. During his training he returned to studying the brain and found he had no choice but to make his career helping children.

“I always liked it that if you are going to do pediatrics, you know it up front,” Dr. Marks said. “If you look at the personality inventory of pediatricians, they don’t look like the rest of the physicians, they look like social workers. I talk to medical students when I have them over at the office and the ones that are going to go into pediatrics have no doubt that’s what they are doing. The ones who have hesitation about it are usually not destined to go into pediatrics.”

Dr. Marks joined Cook Children’s in 1988 and today serves as the medical director for the Movement Disorder and Neurorehabilitation Program.

Dr. Marks said he loves the multidisciplinary approach he finds at Cook Children’s, often working directly with rehabilitation therapists, orthotists, neurosurgeons, orthopedists and others. He has developed several multidisciplinary rehabilitation teams, including the transitional care unit, and specialized multidisciplinary clinics that have been developed for children with spasticity, movement disorders, and neuromuscular disorders.

“You have different people coming from different backgrounds,” Dr. Marks said. “Everybody’s perspective is different and we are all bouncing ideas off one another. It’s one of the great things about Cook Children’s.”

Dr. Marks said that team approach creates better care for patients. He said the goal of the neurology team at Cook Children’s is not just to treat children or find a quick fix, but to make their overall quality of life better. He calls this an exciting time for the Neuroscience Program at Cook Children’s, exploring new and innovative approaches to complex patient issues such as movement disorders and epilepsy.

“We are doing as much as anybody and more than most in the country when it comes to improving children’s lives,” Dr. Marks said. “We continue to expand our offerings. We continue to push the limits of treatment. In the future we will have the ability to treat more children and more complex neurological diseases and make them even better. I’m really excited about our ability to bring these new and innovative approaches to solving some very complex issues.”

During his tenure, Dr. Marks remembers fondly certain patients and how to see their lives dramatically impacted. He recalls sisters he treated who went from being bed ridden to being in wheel chairs to dancing at their senior prom and eventually getting married, leading normal and productive lives.

“Those are the stories you look back and say, ‘Man was I lucky.’ You found the magic key for those kids.”

Then her diagnosis of epilepsy at 7 years old changed this “big character” into a shy little girl, afraid of what people would think if she had a seizure in front of them. When she attempted to return to the porch and entertain her cousins, she had a seizure. They thought she was joking and they all laughed.

“I'm just really a friendly person and I love people,” Bonita said. “I feel like a piece of that was taken away because of my epilepsy.”

Now this 36-year-old mother of four refuses to let the disease that defined her for so long do the same for her 10-year-old daughter Francesca.

“Francesca is so vibrant and full of life. I don’t want her to ever lose that and I never want her to feel the way I did,” Bonita said.

Bonita and her husband, Charles, were concerned about the risk of epilepsy for their two older children Jace, now 15, and Trace,13. But with vibrant and healthy boys, the threat of epilepsy was “off our radar” by the time Francesca was born.

When she was 4 years old, preschool teachers told Charles and Bonita that Francesca threw up a few times during nap time. They didn’t mention anything about convulsions during sleep. But when one of the teachers said Francesca wasn’t making eye contact with them after the nap, Bonita’s intuition told her it was epilepsy.

“In my heart of hearts I knew and I didn't want that for my daughter,” Bonita said. “My husband was not really accepting of that idea. He tried to reassure me, ‘It doesn't have to be that. She might just have a stomach ache or a virus.’ I just felt it.”

The family was referred to a neurologist for a sleep study in their then home of San Antonio and within minutes, they saw Francesca’s arm twitch. It affirmed to Bonita what the EEG would eventually show – Francesca did have epilepsy.

Bonita gave into a short period of beating herself up. After all, she of all people should have recognized the signs of epilepsy she thought.

But the self-pity didn’t last long. Instead, Bonita developed a new resolve. She wouldn’t let her daughter fall into the same trap that she did as a child following her diagnosis. She would become an advocate for her daughter.

“There was a fire lit inside of me that had been missing for a long time because it's totally different watching your child go through this than when it’s yourself going through it,” Bonita said. “The comfort I took as a child was at least I didn’t remember the seizures after they happened. Even though people would tell me, I could get past it eventually. But this is different, seeing it and then it being your child. The time I’m waiting for her to breathe and take that breath … Just for the seizures to stop … it seems like an eternity.”

Following Charles getting his law degree, the Ocampo family returned back to their hometown of Fort Worth. Francesca began seeing Scott Perry, M.D., an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s.

Dr. Perry upped Francesca’s dosage of medicine and has been her doctor since 2013. And Francesca tells her mom all the time how funny he is.

Laughter comes easier to the Ocampo family now. Francesca is the proud older sister of Beau, 3 years old, and is doing well with her epilepsy.

“Francesca’s outlook on life is exactly what we all want for our patients. She won’t let her epilepsy define her, she takes care of herself and she enjoys just being a kid,” Dr. Perry said. “As neurologists, it is our job to help patients and their families get their lives back.”

“The things I have dealt with in my life and even in my adulthood because of epilepsy have been difficult, including depression and anxiety.” Bonita said. “What’s changed my outlook on my own epilepsy is wanting to be an example of life and not an example of fear for Francesca. But because of the way she lives her life, Francesca has inspired me.”

Francesca describes herself as “just a big fireball” who refuses to let her condition get her down. She’s began the Fort Worth Academy of Fine Arts this year and plans to use November, Epilepsy Awareness Month, as an opportunity to explain to her new classmates about living with epilepsy.

“It’s not that I don’t care that I have epilepsy,” Francesca said. “I just feel I’m a normal person like everybody else. I take meds and I have to go to the doctor sometimes and get checkups. What’s happening in here, in my brain, is not epilepsy. It’s just my normal brain. There are just some tweaks to it that makes it kind of weird. I don’t have anxiety at all. The only time I get a little sad is maybe when I have seizure. I’m usually always fine.”

Someday, Francesca wants to sing and be in musicals. But it’s her bold outlook on life that’s helped her mom change the role she’s played since a child from being “scared of my life to stepping out” in the forefront.

Francesca asked Bonita to join her in the pool last year. Bonita told her she’d never learned to swim because she was afraid she would have a seizure in the pool and people would see her. Francesca told her mom not to be afraid and she would teach her how to swim. A year later, Bonita is a swimmer.

Bonita’s drive now is to raise awareness for epilepsy. She wrote a letter to the city of Fort Worth earlier this year that culminated with a proclamation for the local Epilepsy Foundation. She researched to contact the right person at Sundance Square to get the city to go purple for Epilepsy Awareness Month in November and reached out to Cook Children’s to do the same.

“I was so proud of the Ocampo family for helping raise epilepsy awareness and I’m equally proud of the medical center for supporting their efforts,” Dr. Perry said. “Sure, our primary goal as physicians is always to help patients become seizure free, but even more important than that is making sure their quality of life is the best it can be. Part of that goal is making sure everyone is educated about epilepsy, so that fears and misconceptions about the disorder are erased.”

And Bonita plans for this to be only the beginning as she wants people to know what life is like for people living with epilepsy.

All of this because a daughter’s condition has given her mom a new outlook on life that she thought had been lost on her grandmother’s porch nearly 30 years ago.

“Francesca is everything, the very embodiment, I wished I could have been,” Bonita said. “It’s not a vicarious, living through my daughter type of thing. I just don’t want that wonderful sense of fun to fade away in her. Francesca has helped me so much. That’s the cool thing about us. By me not wanting her to ever get to that point of fear and anxiety while wanting to be more of an example to her, I have been put in a position where I have to step outside what I was. Where I did feel like it defined me. I don’t feel that way any longer. This is now just who we are. This is us.”

Cook Children's Epilepsy Program

If you have a child with epilepsy, you're not alone — 2.5 million Americans have this disorder. The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.Click here to learn more. If you would like to help, please visit our giving page. 

“People told me everybody wants to work in pediatrics until you have kids,” Dr. Honeycutt said. “They said, ‘Then you won’t want to work on kids any longer. It will be too much.’ But it was the exact opposite. When I had my own kids I realized even more this was what I wanted. I wanted to help kids like my own. It gave me much more empathy. It made it much easier to take care of them. In my line of work, I’m asking parents to hand their kids off to me and take care of them. They entrust their kids’ lives in my hands and I understand that.”

As a teenager, Dr. Honeycutt saw first-hand the role a surgeon can play in helping a family after a traumatic event.

One afternoon in his hometown of Paragould, Ark., while “horsing around” after football practice, the then 15 year old broke his neck.

A surgical scar remains on Dr. Honeycutt’s neck and so do the memories of his time in the hospital. He describes the scene at the time like what you would see in a bad TV movie as he was placed in traction.

As a patient, he saw physicians changing patient’s lives and making them better. The straight A student now knew what he wanted to be when he grew up.

Then during medical school, Dr. Honeycutt found his specialty.

“When I was doing my neurosurgery rotation, it all just clicked,” he said. “It clearly had all the parts I really enjoyed. I liked being a surgeon. I liked the neurosciences. I liked the workings of the brain. I just loved everything about it.”

While Dr. Honeycutt is now an experienced neurosurgeon, he still strives to be at the forefront of the latest technology and technique. Working on a child’s brain requires not only a steady hand, but the latest in state-of the-art technology.

Dr. Honeycutt and his fellow neurosurgeons use their expertise to perform the most intricate and delicate surgeries, such as deep brain stimulation, iMRI-guided surgery and laser ablation surgery.

“It’s an exciting time right now because we are learning so much about the brain and how it works and at the same time our technology continues to improve with micro instruments, with robotics and computers,” Dr. Honeycutt said. “If I don’t keep learning and keep up with what’s going on, I can get so far behind, rather quickly. One of the great things about Cook Children’s is we are always on the leading edge.”

Another aspect of Cook Children’s that Dr. Honeycutt said makes it unique is the relationship between the neurologists and the neurosciences. As surprising as it may be, Dr. Honeycutt says it’s rare for other hospitals to have the neurologists and neurosurgeons share a clinic together. He calls the working relationship between everyone involved in the Department of Neurosciences at Cook Children’s unbelievable. A lot of it has to do with that communication and the skill of the surgeons and physicians. They push each other constantly to do better.

At Cook Children’s, the neurologists and neurosurgeons can give each other immediate feedback on a patient. “You look at our situation and say, ‘Why doesn’t everyone do this?’ It’s so silly that people don’t do this everywhere,” Dr. Honeycutt said. “It’s one of the things that makes this place so special.”

Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitation Programs at Cook Children’s, says he sees a dozen or more cases often in clusters.

“Influenza can be a trigger, so flu season often triggers some cases,” Dr. Marks said. “There have been some cases associated with mostly older flu vaccines, however in general, immunizations are safe and should be given as recommended. If you are concerned that your child is having progressive weakness, they should be seen by a physician.”

GBS is a condition that can follow many different infections. The process starts after the infection activates the immune system. Sometimes part of the bacteria or virus can look like our own nerves. If this happens, our immune systems can mistakenly attack those nerves which can lead to weakness or paralysis.

At this time, Dr. Marks is not ready to say there’s a relationship to GBS and the ZIka virus. Although it’s not out of the possibility – “there are literally thousands of potential triggers for Guillian Bare’. It is a nonspecific response to an infection.”

GBS can affect people of virtually any age, although it is rare in infants and toddlers. GBS symptoms usually begin with achiness of the muscles or a burning or tingling of the feet and legs.

“Weakness follows, beginning in the feet and progressing up the body, usually over the course of a few days,” Dr. Marks said. “It can occasionally happen more quickly. GBS can involve the diaphragm and breathing muscles which can be life threatening.”

In the mildest cases, monitoring of progress in the hospital is sufficient. If there is loss of ability to walk 100 feet or the weakness is progressing and breathing is endangered, the treatment is usually a five day course of IVIG (intravenous immunoglobulin). Steroids and plasma exchange are other options.

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About the source

Warren Marks, M.D., is one of the the first two Endowed Chairs at Cook Children’s. Dr. Marks joined Cook Children’s in 1988 and today serves as the medical director for the Movement Disorder and Neurorehabilitation Program. Learn more about Dr. Marks and the contributions he's made to Cook Children's here.

In the United States, nearly 1 in 6 children, or about 15 percent, of children from 3 to 17 years have one or more developmental disabilities, according to the Centers for Disease Control and Prevention.

Today, people and organizations worldwide are taking time to acknowledge the challenges those with disabilities face by observing International Day of Persons with Disabilities.

The annual observance was proclaimed in 1992 by the United Nations.

The goal:

• To promote an understanding of disability issues.
• To mobilize support for dignity, rights and well-being of persons with disabilities.
• To create awareness of gains to be derived from the integration of people with disabilities.

At Cook Children's, our physicians work with children with disabilities every day.

So what is considered to be a disability?

"A disability is when an impairment causes a limitation in a life skill," says Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. "From a medical standpoint, that could be a motor impairment, cognitive impairment or even a social impairment, especially when related to a chronic medical condition."

Dr. Marks treats patients with cerebral palsy, muscular dystrophy and dystonia, all of which are disabilities that can create lifelong challenges.

"Physical disabilities impair the way children interact with their families and peers, and the way their peers interact with them. This can result in secondary social disabilities," says Dr. Marks. "Also, children with motor disabilities have more difficulty participating in many activities which can cause problems throughout their life – a higher incidence of obesity and diabetes and all the complications related to those disorders."

Dr. Marks and his team of physical therapists at Cook Children's have spent countless hours researching complex movement disorders. Currently, they are using the newly developed motion analysis laboratory at Cook Children's to work with experts in endocrinology, orthopedics and nutrition in hopes of understanding the impact of obesity on all aspects of mobility. Their work is not only significant for the medical community, it also offers to patients that their quality of life can be greatly improved.

"We're working hard, even investigating rehabilitative approaches including interactive robotics and assistive technology," says Dr. Marks. "But we have to remember that these investigations take time, equipment and money."

About the source:

 Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’sCook Children's Movement Disorders Clinic cares for kids who have challenges with body movement due to illness, injury or congenital ailments. Our team provides your child with a thorough evaluation including a physical examination, complete medical history and testing in order to diagnose the specific type of movement disorder your child has. Based on the diagnosis, the team creates a plan of care that meets your child's unique needs.

I am doing great! I continue to heal more every day and have come such a long way since the accident on February 16, 2014 and my discharge from Cook Children’s on May 9, 2014.

It is hard to believe that it has been more than a year and half since that horrific night that has forever changed my life.

After being released from Cook Children’s I immediately began outpatient therapy four days a week in Denton, Texas. I was able to graduate with my high school class at the end of May 2014, I walked across the stage and received my diploma, with a very emotional standing ovation from everyone in attendance. In July, I took a college course at North Central Texas College (NCTC) in Gainesville, which is about 20 minutes from my hometown, all the while still attending outpatient therapy.

My parents, sisters, aunts and grandparents arranged for my transportation to and from everywhere.

In August 2014, I underwent surgery to release the contracture in my left Achilles tendon. Then started the Fall 2014 semester of college at NCTC taking six credit hours and by this time my outpatient therapy was down to three days a week.

In late October 2014, I was cleared to drive again and what an amazing feeling that was to be able to have my driving independence back. I completed the Fall 2014 semester at NCTC and registered with Midwestern State University in Wichita Falls, Texas for the Spring 2015 semester. In January 2015 I moved into the dorm at college taking nine credit hours. I was still in physical therapy a few days a week so we transferred my therapy from Denton to Wichita Falls which I completed in February 2015.

I moved back home over the summer and underwent further reconstructive surgery on my left thigh in June. I traveled to New York mid-August with my family for vacation, then upon return immediately moved into an apartment with two of my friends in Wichita Falls to start the Fall semester of classes. I am currently a sophomore at Midwestern State University taking 12 credit hours. I have some little things, everyday things, I have to work harder to achieve, but have and I'm adapting.

I changed my major the other day, but still plan on being in the medical field. Tackling Anatomy and Physiology this semester is a challenge. No one is lying when they say it is hard, requiring a lot of memorization.

My short term memory is one thing that is still not how it was before the wreck, but continues to get better every day. I just have to study more and use note cards, color coding, and anything else that will help me remember the material. In Spring 2016 I will apply for the Respiratory Care program at the University with plans of obtaining a Bachelor of Science in Respiratory Care.

I am so very Blessed to have been placed in Cook Children’s Medical Center for my inpatient recovery in the Neuro Rehabilitation Center and in the care of Dr. (Fernando) Acosta and the team of doctors, nurses, therapists and aids. Their knowledge, skills and encouragement with me throughout my recovery along with Faith, Prayer’s and so much support from my family and friends are a direct relation to my successful recovery. 

Click here to read Abby's original story.

Richard Roberts, M.D., a neurosurgeon at Cook Children’s, wonders what it’s worth for your child to play sports with a reputation for head trauma.

“I think the fact that when the NFL players sued the league initially and won, the judge said the settlement (more than $700 million) wasn’t big enough,” Dr. Roberts said. “That says a lot about this growing issue more so than anything else.”

The issue discussed in the NFL cases has been CTE (chronic traumatic encephalopathy), a progressive, degenerative brain disease that has been found in some athletes with repetitive brain trauma.

Research is currently being done to study just how playing contact sports such as football mainly, but also soccer, can cause damage to an athlete’s head. But is it worth it for parents to wait for the results of this work.

“Amateur sports are different than professional sports because no one is feeding their family with the activity that they are doing,” Dr. Roberts said. We need to look beyond the short term and really understand what could happen in the long term. That potential for long term problems should be the primary thought, not the secondary thought.

“What is the actual incidence? We don’t know. But if it was your kid, how much would you be willing to risk? Even if it was 1 in 10, would you roll the dice on your own kid?”

Dr. Roberts has previously worked at Children’s Hospital in Philadelphia and Charity Hospital in New Orleans. While he saw concussions at the other hospitals, he’s never seen parents argue with him about concussions as he has seen at Cook Children’s.

“Part of what I’ve seen which is different here than other places is that I do get push back from parents who I think underestimate the severity of some of these injuries,” Dr. Roberts said. “Some of it is that they want their kids to play and I think some of it is the short term nature of some concussions.”

Children get concussions and they do well relatively quick, so opposed to having a broken arm which is in a cast or needing surgery and having stitches for three weeks, kids hurt their heads, they are knocked unconscious for five minutes, but then feel essentially better soon after. This apparent sign of improvement makes it difficult for some parents to grasp that their child may have a fairly significant brain injury.

“The more we understand concussions and the more we see people who have hurt their heads for various reasons, soldiers, professional athletes, anyone who has suffered a head injury, I think that we are seeing that in adulthood they are starting to have more cognitive issues,” Dr. Roberts said. “Now the science is not perfect yet. We can’t say to a football player you had three concussions and that’s why you have dementia. We can’t say to the soldier you were exposed to be a bomb blast and that’s why you have dementia because it could be multifactorial. It could be that you have the right genes to make you this way later on. But the percentage seems higher in people who have had traumatic brain injuries.”

Dr. Roberts says parents should be concerned after head injury one. He knows you have to let kids live their lives and be kids, but the brain wasn’t made to get beat up like happens sometimes in sports.

It’s not known for sure that after one concussion, people are more likely to get more, but Dr. Roberts’ suspicion is that it is likely the case.

And when does he have a serious heart-to-heart with the parents and the athlete?

“After two. We discuss no longer participating in the activities which could cause further injury because the likelihood of you having a head injury in your lifetime is still pretty high,” Dr. Robert said. “You are going to hit your head on a tree branch or you are going to fall off your bicycle or someone is going to run into you. You are going to be stepping out of the car and slip or walking across ice and fall down. My opinion after behavior has shown us that you are going to get injuries in a particular sport, you should probably not be playing in that sport because you are not able to protect your head.”

Dr. Roberts has seen strong reactions from both the parents and the kids after being told he or she should quit playing their respective sport. And it’s not just football as most people expect. It’s with the gymnast who has fallen off the bars and knocked herself out or the soccer player who has headed the ball and gotten knocked unconscious.

But football still remains king in Texas – in popularity and in concussions.

So what can be done about it?

Dr. Roberts is not sure there’s a good answer to that question. Building better equipment helps, but then armoring players probably makes them feel invincible and they hit harder. If you take away the facemasks or hard shell football helmets, he expects you will return to the old days – less concussions, but more skull fractures and in the process, immediate deaths on the playing field.

For now, Dr. Roberts wants parents to monitor their kids closely and to take the recommendations from their doctor closely. If they say it’s time to stop – stop!

“All the steps that sports are taking to make it safer are positive,” he said. “I think that everybody involved has to think less about return to play and more about long term health.”

About the source

Richard Roberts, M.D., is a neurosurgeon at Cook Children's. When a child with a neurological disorder requires surgery, the experts at Cook Children's Medical Center offer comprehensive care and state-of-the-art technology. With the help of such state-of-the-art equipment as the revolutionary intraoperative MRI (iMRI), our neurosurgeons are able to determine effectiveness of surgical procedures for cranial and spinal nerve disorders and tailor the treatment to each child's unique needs.

“It’s wonderful day. I thought I would never be a mom,” Kristy said. “Mother’s Day is not something I take for granted. I’m grateful to my mother and grandmother, who taught me to be a mother . I love it.”

But when you consider each child has his or her own special needs, life can be amazingly hectic and difficult. And what’s the biggest challenge for the mom of nine?

“Probably laundry,” she jokes. “Would that sound crazy if that was my answer? I think more than anything, it’s working to meet each kid’s individual needs where they are at that particular moment. And then looking ahead, some of the kids aren’t as independent as they should be when they hit that magical 18 mark. Some are not ready to go out into the world yet. Some days that’s the scariest thing for me.”

Kristy’s story began as it continues now with her husband John. They loved kids then as much as they do now, but they couldn’t have any of their own.

John was a foster care agent. He was 26 at the time and Kristy was 22 when they met Luke and Josh, 7 and 2 respectively. Then two years later, they met Kathryn and Daniel, a brother and sister who were 6 and 4 then.

“After we got them, we kind of thought we were done,” Kristy said. “We weren’t sure though and we kept our certification to get more kids placed with us. Then two years later we met a set of precious little twins – Juliana and Josiah, then 4, who were half of a sibling group with Paul and Caleb, then 7 and 5. They were in an emergency situation. Their life would be pretty demanding. We thought we could add four and we already had four, so eight sounded about right.”

But what sealed the deal was when Juliana said to John, “All my friends have a daddy. I don’t have one. Will you be my daddy?”

Maybe some could still say no, but not the Goodnights. Their hearts are too big and their skills at taking care of kids with special needs too strong. All of their eight adopted children have medical and/or behavioral needs.

The Goodnights take their children from their home in Corsicana to Cook Children’s to be treated at the medical center. Kristy jokes her kids have many “ists” – endocrinologists, neurologists, psychologists …

“We have all of our specialty care through Cook Children’s,” Kristy said. “We really appreciate the cohesiveness of care. The specialties share information with each other. One doctor sees what the other doctor has done. There’s a great consistency of care. The other thing we like is we see the same doctor every time in their specific specialty and that’s not always true with other places. And we see a slew of doctors for everything from cerebral palsy to autism to emotional issues. We see doctors for behavioral issues, intellectual issues, growth issues – a wide variety of stuff. We are at Cook Children’s on a regular basis.”

Of course with the number of kids and the challenges that each bring, Kristy admits that she sometimes wonders if she’s the best person to care for them.

“There’s always days where I think I’m not doing the best I can and I think surely I can be a better mother,” she said. “I look around and the laundry is not done and the house is a mess. And then I remember the alternative. Without us, they wouldn’t have a family at all.”

Kristy chuckles. “And then I realize, I’m better than nothing.”

Needless to say, John says his wife is selling herself way short.

“She keeps everybody grounded, including me,” he said. “He keeps me focused on what’s important and not letting things bother us that might get in the way of that fact that we’re all in this together. She’s the most loving person that I know and you can tell she wears her emotions on her sleeves. You can look at her and know our kids are extremely important to her.”

And with that kind of love, why stop at eight, right? The Goodnights realized they’d experienced so much as parents, except what it was like to raise a newborn.

Kristy and John looked at other countries, but nothing came to fruition. Then they found a story on a new spin on in vitro fertilization – adopting an embryo. The embryo had been frozen for 10 years and was made available to the Goodnights. They only knew the age of race of the parents, but nothing else. They made the decision to take the baby without knowing anything more. They were used to facing challenges and they would be up for one more challenge.

So far, the newest member of the family, Jude, has been healthy. But he's still a toddler in a house with eight other children. Kristy says that’s OK because one more person only adds to what makes the Goodnight household special.

“The love. I love having a family. There’s just so much love in this house,” Kristy said. “There’s always someone laughing. It’s so much fun. I never expected that and the way the other kids care for the baby. It’s just tied everybody together in the ends. We have sweet kids with big hearts and that’s given us the ability to love everything we’ve gone through.”

Now she prays for Tre’s caregivers to make her son all better.

Tre, who is 9 years old, has been seen by the Rehabilitation Services team at Cook Children’s since his parents adopted him as an infant. Most of those issues centered on his articulation skills. Tre’s history with Rehabilitation Services started with audiology and other physician specialists; speech therapy services began at 7 years old working on articulation skills. 

Then about 15 months ago, Sara Adams, Tre’s speech pathologist, received a call from Jennifer to say her work with him would have to go on hold indefinitely.

Tre was involved in a horrible boating accident. He sustained a head injury and was in a coma at another hospital. But the miracle for the Faulkner family occurred and within two weeks, Tre was up and walking.

After his accident, Tre returned to therapy at Cook Children's Urgent Care and Pediatric Specialties – Mansfield and worked with Occupational Therapy, Physical Therapy and Speech Therapy to regain skills that were lost after his brain injury.

A year later, much of Tre’s care takes place at the Cook Children’s Rehabilitation Services at Mansfield. The focus is on Tre’s short-term memory loss and his severe ADHD, as a result of the injury.

“God has blessed us so much,” Jennifer said. “The Mansfield community has been with us since the beginning, I’m so thankful. I’m also thankful for the amazing care Tre has received since his injury. At Mansfield, Tre has really been helped in many ways, through his physical, occupational and speech therapy. They have helped him so much with his memory and his balance. It’s truly been miraculous.”

The rehab at Mansfield is working for Tre. Academically, Tre’s test scores are in the average range for a child his age. His mom says he’s learning and making strides every day.

And Tre’s doing very well physically. He recently received his gold belt in karate. Makes sense for a kid who has proven time and time again how tough he is.

“The progress Tre has made since his accident is truly remarkable,” Adams said. “Tre still has some struggles with his attention and memory that impact him every day. However, he continues to improve and learn how to work through these struggles. Tre’s sense of humor, determination, and supportive family are his greatest strengths. Tre is such a funny kid! He loves to tell jokes and riddles. One of his favorite jokes is: ‘Why don’t ducks tell jokes when they are flying? … They might quack up!’”

To see how far Tre’s come since his injury it’s hard not to smile at the miracle that’s occurred and the occasional duck joke.

For more information

At Cook Children's, we provide more than 60 pediatric medical and specialty clinic offices throughout Texas. Thanks to our skilled group of clinicians who support the leading-edge technology found among our specialty services, Cook Children's is the destination when it comes to taking care of your children.

Cook Children's Urgent Care and Pediatric Specialties - Mansfield is located at:

801 Matlock Road

Mansfield, TX - 76063

To make an appointment, call 817-347-8400.

Specialty services at Mansfield inlcude:

• Endocrinology and diabetes
• Gastroenterology and nutrition
• Nephrology and dialysis
• Neurosciences
• Orthopedics
• Pediatric surgery (inpatient/outpatient)
• Psychiatry and psychology
• Rehabilitation
• Urgent care

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!

Photo credit: Kelly Gavin, Texas Rangers.