For Stephanie Acord, M.D., a pediatric neurologist specializing in neuromuscular disorders at Cook Children’s, those first conversations with parents are much more than explaining a diagnosis.

“For these families, the biggest thing is trying to learn to trust us,” said Dr. Acord. “We are going to do anything and everything that we can to get their child the best type of treatment, to have the best outcomes possible.”

That trust is especially important because with SMA, time matters.

Before Texas added SMA to its newborn screening panel in 2021, many children were diagnosed only after symptoms began to appear or older siblings were also diagnosed with SMA. Today, newborn screening allows specialists at Cook Children’s to identify babies much earlier and begin evaluating treatment options before symptoms develop.

“Besides stroke, where every minute counts, in the SMA world, essentially every day counts,” Dr. Acord said.

SMA is caused by a genetic change that prevents the body from producing enough survival motor neuron (SMN) protein, which keeps motor neurons healthy. There are five types of SMA categorized by disease severity and the age at which symptoms begin. Even though no cure exists for this condition, there are four different types of medication that are currently approved by the U.S. Food and Drug Administration (FDA) to treat SMA. One of them is SPINRAZA®, a treatment medication that was first approved by the FDA back in December of 2016.

Because Jesse’s newborn screening identified him early, his care team immediately began confirmatory testing while working to start treatment without unnecessary delays.

Rather than waiting weeks for additional approvals, Jesse began taking Evrysdi®, an oral medication that served as a bridge while the team secured authorization for a gene therapy medication called Zolgensma®. Jesse continued his oral medication as physicians closely monitored his progress.

Although Jesse continued to make progress with the first two treatments, Dr. Acord believed he could benefit from the third treatment, SPINRAZA®.

At Jesse’s one-year follow-up appointment, he had not yet reached some of the developmental milestones his care team had hoped to see. After several conversations and close follow-up visits with his family, Dr. Acord recommended adding the third treatment medication that Jesse had not yet received.

On March of 2026, before Jesse’s scheduled treatment appointment, the FDA announced the approval of a higher-dose regimen of SPINRAZA® for eligible patients. The approval did not introduce a new medication. Instead, it expanded dosing for an existing therapy that has been used to treat SMA since 2016, allowing eligible patients to receive a larger dose over a shorter period.

Recognizing the potential benefit, Dr. Acord and her team immediately contacted Jesse’s parents and discussed the newly approved dosing option.

“For Jesse, that meant he was getting more medication in a shorter period of time,” said Dr. Acord.

After discussing the risks and benefits, Jesse’s parents agreed.

Jesse became the first patient in Texas and only the second in the United States, to receive the newly approved higher-dose regimen at Cook Children’s.

“Instead of having to undergo four lumbar punctures, which are more invasive procedures, within a two-month period on the regular standard dosing regimen, he was going to undergo two of those, within a two-week period, but essentially get double that dose within two weeks compared to over two months,” Dr. Acord explained.

Within weeks of the first dose, Jesse’s family noticed changes. He began pulling himself up to stand, cruising along furniture, and clapping his hands. He even attempted to climb stairs. His family quickly learned how to appreciate the little things children normally do, and they took nothing for granted.

For Dr. Acord, those moments never lose their significance either.

“When children come walking in or they just walk across the room for the first time, your mouth hits the ground, and you're just like, ‘this is why I do what I do,’” said Dr. Acord.

Today, watching Jesse continue reaching new milestones gives the family hope they could not have imagined during those first frightening days after his diagnosis.

“I'm glad I took the chance on trying something new, because I just want to give him the best opportunity to walk,” said Lupe Vasquez, Jesse’s mother.

Looking back, she hopes other parents facing an SMA diagnosis will give themselves grace.

“I would tell [other parents] that they're not alone. I know exactly how it feels whether it's SMA or another disease.” Lupe said. “Take care of your mental health… you have to make sure that you are okay too.”

Thanks to early screening, medical innovation, and a team committed to finding every possible advantage, Jesse’s journey is just beginning. Each new milestone serves as a reminder that, for children with SMA, every small step forward can change the course of a lifetime.

Discover how rare genetic epilepsies led him to international recognition, why Cook Children's stood out as his perfect home, and how his dedication to research is transforming the future of neurological care. Plus, we explore how art and neuroscience intersect in a way that heals, inspires, and brings the community together.

Join us on Spotify, Apple Podcasts or YouTube for a powerful conversation about innovation, perseverance, and the human connection behind medicine.

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.”

By Heather Duge

Valerie Shorten, BSN, RN, and her son, Marquis Shorten, are no strangers to overcoming obstacles. Each one has led them to where they are today.

Marquis faced a life-changing diagnosis at Cook Children’s in 2022 – the same hospital where his mother Valerie works. She was determined to become a nurse after her brother was killed.

“I always thought about what I could have done to help him had I been there,” Valerie said. “That’s when I knew nursing was my calling.”

Nursing Journey

In 2011, Valerie found out about an open position at Cook Children’s – a place she had visited a few years before when Marquis had a minor injury while playing with his brother.

“I remember how caring everyone was and thinking with three boys it was probably not the last time I would be there,” Valerie said.

After 15 months of working in Food Services, she applied for a secretary position in the Neonatal Intensive Care Unit (NICU). In May 2021, she graduated from nursing school and started as a nurse resident at Cook Children’s -- 10 years to the day of her first day in the cafeteria. She rotated through all the ICUs and the emergency department in one year. Now she is a nurse in the Cook Children’s NICU.

“I know that no one chooses to come into this hospital,” Valerie said. “You never know what a person is going through, so I make sure I always give the kind of treatment I would want for my child.”

Shocking Diagnosis

In April 2022, Valerie was in the middle of her nursing shift when she received a text from Marquis that read “My spine hurts.” She told him to take ibuprofen since she thought it could be related to his running.

“Marquis is a runner and was No. 1 in the district,” Valerie said. “He was slated to run in the regional meet to see if he would qualify for state. I thought the pain could be from a pulled muscle or running injury.”

Valerie told him to rest and let her know if it worsened. Eventually, Marquis drove himself to the ED at Cook Children’s and at that point could not feel his right leg.

“I met him at the ED but didn’t think it was anything too severe,” Valerie said.

An MRI revealed a spinal epidural hematoma, which is like a pooling of blood on the spine, and Marquis underwent emergency surgery. If too much time passed, Marquis could have become paralyzed.

“Everything was a blur and I remember being overly emotional as Marquis continued to lose the feeling in his legs,” Valerie said. “But I knew he was at the right place.”

Marquis was quickly wheeled to the operating room where Medical Director of Neuro-Trauma, and pediatric neurosurgeon Daniel Hansen, M.D., removed the large blood clot that was compressing the spinal cord.

Recovering Physically and Mentally

Valerie became anxious thinking about Marquis's mental state when he woke up and realized all he worked for was not going to happen that year at the regional track meet, if at all. 

“A nurse pulled his father, DeMario, and me aside and told me that when Marquis woke up, he asked when he would leave that day because he had a track meet in a few days,” Valerie said. “The real pain came when all the times were posted from the race he missed.”

Valerie and DeMario helped Marquis work through his emotions but did not let him stay down too long.

“I told him he could decide to lay there and be sad or decide what’s going to happen next,” Valerie said. “My life motto is that you are the writer of your story.”

Nurses realized how hard it was for Marquis to face the reality that he missed the regional meet and was not sure what running would look like in the future. During the 10-day stay in the Pediatric Intensive Care Unit, Marquis says the nurses went above and beyond to bring him comfort. On a particularly hard day, the café was out of Chick-fil-A milkshakes, so the nurses gathered all the supplies and made him one.

“They did everything I needed before I even asked for it,” Marquis said. “They fixed my pillows a certain way, brought me the Gatorade flavor I liked with a straw, broke up pills because I couldn’t move my neck to swallow and positioned my toes for me when I couldn’t move them.”

Back on Track

Valerie says everyone was surprised at how fast Marquis progressed. Throughout his healing journey, he used a brace, walker and wheelchair. After lots of hard work in physical therapy, he was cleared to jog four months after surgery and in January 2023 ran in his first race since surgery at Texas Tech University.

“My parents kept me going,” Marquis said. “My track coaches Jesse Heard and Sa’Donna Thornton also were there for me. Coach Heard gave me a love for track and all he instilled in me is a big reason why I treat everyone with kindness. He has sacrificed countless hours just to help me succeed. Coach Thornton played a huge part in helping me gain my confidence back and keep my positive outlook on the situation. I knew God had a plan and it would turn out OK.”

A Lifelong Dream Come True

Marquis says coming back from a major surgery has only made his passion for running stronger, and he wanted to prove to everyone he was just as good. He has accomplished that and more. When he graduated high school in May 2023, he received the Optimist Award. This fall, Marquis will attend Texas Christian University on a full-track scholarship – a goal he set for himself at only 10 years old.

“Marquis decided in fourth grade that he would one day attend TCU,” Valerie said. “Jokingly, I expressed how his father and I did not budget for TCU. At the time, our fourth grader looked at me on the car ride to school and said, ‘Don't worry, I'm going to get a scholarship.’ His dreams came true.”

“The most gratifying part of my job is seeing kids through their illness to the other side,” Dr. Hansen said. “For Marquis, that means a life that is everything he has always wanted.”

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.”

Making a school “seizure ready” can entail a number of steps and it is important to get started on these as soon as possible. M. Scott Perry, M.D., medical director of Neurology and an epileptologist at  Cook Children's, offers the following advice.

Step 1: Does your child have a seizure action plan?

One of the most important components of being prepared for the school year is having a plan in place should a seizure occur. A seizure action plan is a form provided by your medical team which describes the types of seizures a child has and what to do if one occurs. The plan covers the key components of seizure first aid, as well as for instructions on how and when to use rescue medications for the child’s seizures. A standard form is provided by the Epilepsy Foundation and is commonly used.

Click here for a Seizure Action Plan from the Epilepsy Foundation.

For future reference, I encourage parents to begin requesting updated Seizure Action Plans at least a month before the school year starts, as many clinics get thousands of requests before the start of school and completing them may take time.

Step 2: Is your child’s rescue medication appropriate for their current age and weight?

Rescue medications are commonly prescribed to patients with epilepsy and are most often used for seizures that are prolonged or occur in clusters. Each patient will have unique circumstances for which a rescue medication may be appropriate. Some patients may not have a rescue medication as part of their Seizure Action Plan – for example, if their seizures are rare, well-controlled, and typically very brief.

A variety of rescue medications are available. For prolonged seizures, particularly convulsive type, patients may use rectal diazepam or intranasal midazolam. These medications are favored because they can be absorbed quickly for rapid treatment of the seizure and they don’t require putting anything into the mouth of the person that is seizing. Rectal diazepam comes ready to use for the age/weight of the child. Currently, nasal midazolam will have to be measured out by school staff before administration, but a new ready-to-use formulation has been approved by the FDA and should be available soon.

For patients with clusters of brief seizures, rescue medications such as clonazepam can be given by mouth between seizures. Several other medications, such as diazepam, midazolam, and lorazepam, also come in oral formulations that might be swallowed or put between the gum and cheek of a patient for effect.

It is very important that parents and their providers make sure the rescue medication prescribed for the child is appropriate for their age and weight. As a child grows, the dosing of medications will change. For those patients that have rare seizures and rarely require rescue medications, it is possible that the dose prescribed years ago may no longer be appropriate and therefore, may be less likely to work if the dose is too low.

Step 3: Can your child’s school administer the rescue medications provided?

It is important to know what medications your school is able and willing to give. While rectal diazepam is commonly used in schools, there are some school districts in the U.S. that only allow the medication to be given by a school nurse or similar medical personnel, even though the drug was designed to be administered by laypeople. If your school does not have a full-time nurse, there may be times when the medication cannot be given and an alternative rescue plan may be needed. Likewise, some school districts will not administer nasal midazolam because this formulation of the drug is not FDA approved to be utilized in this manner, though in the medical profession, we’ve used it this way for many years. Talk to your school about the seizure action plan recommended by your medical team. If they are unable to give rescue medications suggested, talk to your team to see if there are alternatives or if training can be provided to the school to ensure the rescue plan is followed.

Step 4: Is your child’s school “seizure ready”?

Probably the most important step in making sure your child is safe at school is making sure the people caring for them during the day are prepared to recognize and treat seizures. Despite how common epilepsy is, many people are only familiar with one type of seizure – tonic clonic (previously referred to as “grand mal”).

It is important that teachers and staff understand what seizures look like for each child with epilepsy, so they can recognize when rescue treatments may be needed, but also to keep parents informed if seizures are occurring frequently and may require a visit to the doctor to discuss treatment changes.

Some seizures, such as absence and partial seizures, may only manifest as staring or decreased response. For these cases, it is important that staff are aware so they can recognize seizures and don’t confuse these behaviors with simply ignoring instructions or bad behavior. Finally, for some children, their first seizure may occur at school and it is important that staff be able to recognize seizures in those who may have no prior history.

There are a number of ways for school personnel to become educated about epilepsy. The Epilepsy Foundation provides many resources including online and in-person training of school nurses and staff on seizure recognition and first aid.

Click below for a couple of great tools:

Managing Students with Epilepsy – school personnel and school nurse training

Seizure Training for School Personnel

The Epilepsy Foundation will also provide an ECHO course for school nurses starting October 2019. This is an online, interactive course for school nurses that includes instruction from epilepsy experts and allows for collaborative case presentations to discuss seizure recognition, first aid, and rescue treatments. Information for this course will be available on www.epilepsy.com in the near future. A helpful Seizure First Aid poster can be found by clicking here.

Finally, the Epilepsy Foundation will host a webinar from 7-8 p.m. CST on Wednesday, Sept. 25, 2019, on rescue therapies are open for anyone to attend.

Resources For Parents:

• Cook Chidren's Comprehensive Epilepsy Program
• Epilepsy
• Sam's Law
• Seizure Action Plan
• Seizure First Aid
• Seizure Training for School Personnel
• Managing Students with Epilepsy - School Personnell and School Nurse Training

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.’”

During his residency at the Children's Hospital of New Orleans, Dr. Roberts stood at the head of a young patient's bed, rolling him down the hospital corridor. The patient had just come out of brain surgery when he looked up at Dr. Roberts and asked, "Can I go home tomorrow?" It was at that moment he knew he had to work in pediatrics.

"For children, it's all about getting out of the hospital," said Dr. Roberts. "Everything they do is to get back to their mom's cooking, their friends and their toys. Everything that they do is to get better. It is an amazing thing to see that kind of spirit in a patient. And, as it turns out, those patients are children."

Dr. Roberts didn't always know he wanted to be a neurosurgon. In fact, he wasn't originally even interested in the field of medicine.

Richard Roberts was born and raised in New Orleans. He declared three majors before earning a degree in Philosophy. Unsure of what he wanted to do, he worked for five years as a mechanic, a contractor and a roofer. 

One day a friend, who happened to be a medical student, told him that he "couldn't be a roofer forever," and encouraged him to try medical school. Roberts agreed to try it. 

While working days as a roofer, Roberts took his prerequisite courses at night and began medical school at Louisiana State University at the age of 28. He intended to be a small-town, family practice doctor. 

During his first year of medical school, he attended a lecture given by the school's renowned Chair of Neurosurgery that included a video of a basilar tip brain aneurysm surgery.

"The aneurysm was in the deepest part of the brain, impossible to get to," Roberts said. "When he finished his lecture, the physician giving the lecture pointed across the screen and said, 'this entire area is the size of a centimeter.'" Dr. Roberts hooked.

Dr. Roberts went on to do additional training with an orthopedic surgeon to gain a unique perspective on how other specialists look at the spine and how they approach repairing it. It was the physical and mechanical aspects of repairing spines that intrigued him - putting in screws and rods to straighten the spine, in addition to operating on tumors of the brain and spine. 

When Dr. Roberts came to Cook Children's in 2007, he joined two other top pediatric neurosurgeons, David Donahue, M.D., and John Honeycutt, M.D., and a team of professionals that he describes as invaluable. He regularly consults directly with physicians and specialists across the medical center. He says this open, easy collaboration is one of the greatest benefits of working for Cook Children's Health Care System.

Since being at Cook Children's, both of Dr. Robert's own daughters have been patients. When one daughter had ear tubes put in, it was knowing the anesthesiologists and how careful they are, that eased his mind the most. 

His other daughter had tethered spine surgery, a surgery that Dr. Roberts performs on a regular basis. Just as he trusts his partners to care for his patients when he is away from the medical center, he wholeheartedly trusted them to perform surgery on his own daughter. 

"Like any other parent, I went to pre-op. When it was time for her to go back, I gave her a hug and a kiss. She was taken to the operating room and I went to the waiting room," Dr. Roberts described. 

"I knew how long the surgery takes because I do it all the time. And I made it all of seven minutes before looking at the clock. I know how safe the surgery is, but having that parent experience is very different."

Just as Dr. Roberts respects his coworkers, their admiration for him also runs deep.

"Dr. Roberts is often thanked by families for performing a life-saving procedure on their child," said Grace Crotzer, physician assistant to Dr. Roberts. "He will always bring the spotlight back to the patients and tells families that he only worked a few hours, whereas their child had the actual hard work during the recovery process. I admire Dr. Roberts in so many ways and consider myself lucky to learn from him every day."

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It can be a hard thing for adults to deal with. Unfortunately, many children suffer the same pain. For some, it’s a genetic condition that’s been passed along to them. But for others, migraines are the result of injury. For 15-year-old Olivia Gillespie, her migraine problems began when she received her third concussion.

“It happened in cheerleading practice, I was kicked in the head,” says Gillespie. “I was fine. I didn’t think it was that big of a deal.”

Then months later, Gillespie was on a ski trip with her youth group when a headache came on and never went away.

“I just kept doing what I was doing and tried to not let it have an effect on me,” she said.

Gillespie tried to ignore the pain for two months before she said anything to anyone, but then the pain got worse.

“Olivia had an ongoing headache that would not fade. On a scale of one to 10, it was a consistent five," said Amelia Gillespie, the teen's mother. "It wasn't until her pain reached level seven that it really began to affect her.”

When Cynthia Keator, M.D., pediatric neurologist at Cook Children’s, first saw Olivia, she wanted to make sure her headaches could be treated without medication. Together, they worked on her sleep habits and diet. Dr. Keator also suggested supplements such as B2, and Omega 3, which has shown to help with headaches. In addition, Gillespie was referred to the Biofeedback Clinic at Cook Children’s.

“Biofeedback teaches patients how to control their pain by controlling their breathing, heart rate and body temperature,” says Dr. Keator.

Biofeedback specialist Nanny Christie, Ph.D., has been teaching the painless technique for decades.

“We place the child in a reclining chair and use pads to measure their body activity,” says Christie. “The equipment plugs into a laptop so the kids can see everything on the computer screen. If they tighten a muscle, a line goes up. If they relax, the line goes back down.”

Christie says teaching children to harness their breathing and muscle movement this way allows for real time learning. She says about 80 children are seen in her clinic each month. A typical visit is 45 minutes to one hour and each child is seen roughly four times.

While it wasn’t the end-all, be-all cure for Gillespie, it did help. She says she uses the technique to curb her head pain. If she feels a headache becoming worse, she can focus and calm her anxiousness which in turn can help the headache.

Also, ask your doctor about preventative medication. Your doctor may prescribe something prescription strength or a natural supplement to ease the pain.

Make sure you DON’T ask your child this question:

“How’s your headache?”

You may want to, but remember that asking about a headache is like scratching a mosquito bite. By asking, you’re reminding your child about their pain.

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.

The Texas Department of Public Safety will be responsible for the licensing of at least three dispensing organizations by Sept. 1, 2017 before CBD will be available for patients.

CBD is the non-euphoric component of marijuana and contains no psychoactive properties, so it doesn’t produce a “high.” CBD is not administered by children smoking. It is typically formulated into an oil-based liquid so it can be given by mouth.

Texas agencies will regulate the distribution of the oils to patients whose symptoms have not responded to available treatments and the risks of treatment are outweighed by the potential benefits, according to their epileptologist. The treatment has to be agreed upon by two epileptologists before CBD can be administered.

M. Scott Perry, M.D., medical director of the Epilepsy Monitoring Unit and Tuberous Sclerosis Complex Clinic at Cook Children’s, estimates he discusses with parents and patients the pros and cons of marijuana use for epilepsy three or four times a day at minimum.

Dr. Perry said families are looking for any therapy that works for their child’s uncontrolled seizures once other options have failed, and some have either left the state or had plans on leaving Texas if the bill didn’t become law.

“I think we have seen enough in the other states that have already made CBD available to understand there is potential benefit to CBD use,” Dr. Perry said. “From what we’ve seen in the medical community so far, it’s very encouraging, but more research still needs to be done before CBD is a treatment of choice for most patients with epilepsy. For now, CBD may provide benefit for a small population with intractable (unmanageable) epilepsy, in which other treatments have been unhelpful. I’m glad that this bill will now afford me the same opportunity as other physicians in my field to prescribe CBD to this population of patients in Texas.”