By Alexis Pechek, Unit Secretary, NICU

Luciana Marie entered the world in February 2021, right after an ice storm blanketed Fort Worth. Her birth brought with it an “at birth diagnosis”- we had no prior knowledge of her heart defect or any markers suggesting Down syndrome during pregnancy. Our first glimpse of Luciana filled us with awe, but also a sense that something was different. Babies are often swollen after birth, so we initially dismissed it as that. However, the next morning, we received her diagnosis of Down syndrome and a heart defect, which left us overwhelmed. We struggled to process this unexpected news and question whether we had somehow failed her during the pregnancy. I, as her mother, felt like I had let her down when I was to protect her.

We mourned the child we envisioned and embraced, with open hearts, the child we didn’t know we needed.  Grieving was a necessary part of our journey, and we realized there was no right or wrong way to navigate it. But in the midst of our grief, we began to transform into parents we never thought we could be, thanks to Luciana. Everything we had heard about Down syndrome had been colored with negativity, and we couldn’t help but fear what the future held. But we resolved to turn things around because Luciana, like all individuals with Down syndrome, is inherently worthy.

Luciana's resilience, patience and kindness

Luciana has left an indelible mark on our lives. She has taught us resilience, patience, kindness, and above all, how to be fighters, just like her. We aspire to create a world where individuals with Down syndrome are treated equally and inclusively, where access to care, resources and support come at ease and acceptance is the norm. Luciana ignited a passion in us to advocate for her and show the world her beauty. After all, isn’t that what every parent wants for their child?

As Luciana grows, we wonder about her limitless potential. There are many misconceptions about individuals with Down syndrome, but there are also countless examples of them achieving greatness, whether as athletes, models, actors, public speakers, or students pursuing higher education in college. If we limit their opportunities, how will we ever discover what they are truly capable of or witness them thrive in life?

Raising a child with a disability is undeniably challenging, but it’s also profoundly rewarding. There’s no rulebook for parenting, especially when your child has a disability. We’ve learned to navigate this journey with the help of families who’ve walked this path before us and supportive organizations here in the Dallas-Fort Worth area, such as Down Syndrome Guild of Dallas, Down Syndrome Partnership of North Texas (DSPNT), and Hope Story. Cook Children’s Medical Center has also played a crucial role in Luciana’s care.

To the parents who’ve just received a new diagnosis, we understand the fear, confusion, and uncertainty that can engulf you. I ask you to take it one day at a time and cherish your baby first, the diagnosis second. Don’t miss out on the joy of these precious early moments. Reach out to local Down syndrome organizations, seek support from friends and family, and connect with those who have traveled this journey before you. Support that has your back, guides you to resources, and advocates for individuals with Down syndrome can make all the difference.

What health care workers should know

Health care workers can also be crucial allies for individuals with Down syndrome and their families. They can advocate when needed, ensure proper care, and prevent anyone from slipping through the cracks. Volunteering or donating to local Down syndrome organizations is a tangible way to contribute and recognize their worth.

In addition, using person-first language is essential. It’s “Child with Down syndrome” or “Individual with Down syndrome”, not “Down syndrome Child” or “Downs Baby”. A disability is something they have, not who they are. We’ve also personally learned to eliminate the use of the dreaded r-word from our vocabulary. This word, even when not used negatively, is offensive and hurtful, implying that people with Down syndrome are less competent. The words we choose to describe people shape how we treat them, and changing out language can signal a shift towards greater inclusivity.

Luciana, whose name means “light” and “glowing soul”, truly lives up to her name. We chose this name before we even knew about her diagnosis, something tugging at us that she would need a strong and special name. Love radiates from every inch of her, and if you ever have the privilege of her embrace, you’ll carry it with you, forever. Luciana has been a fighter since day one, and nothing will deter us from advocating for her every single day. While this journey wasn’t what we expected, we know for a fact, it was undoubtedly what we needed in our lives.

In June 2018, Payton Singh arrived via ambulance to Cook Children’s Emergency Department in a barrage of flashing lights and sirens. She was just 12 years old and decided to end her short life while her parents were away from home.

Payton and her family returned to Cook Children’s this week to reunite with her medical care team who saved her on her darkest day.

“I can’t even explain the emotion and the panic that sets in as a parent,” said Brandy Lumbert, Payton’s mother. “After getting the call, I remember running into the emergency room - they knew exactly who I was. And then she flat-lined right in front of me. As a parent, you want to jump in and tell the doctors and nurses to move faster, but you’re just standing there, helpless.”

Payton and the Lumberts also shared their story on the latest episode of our Raising Joy podcast.

Payton’s brother, Kegan, found her unconscious in her room and took action well beyond his years. Though he was just 8 years old, he had the wherewithal to call 911, put the family’s dogs outside and notify his parents that help was on the way.

 When officers arrived at the Lumbert’s home in Keller, Texas, they believed Payton had been without oxygen for 12 minutes.

 “Doctors told us, ‘She’s alive but she’s not showing any brain activity,” said Nick Lumbert, Payton’s stepfather.

 The medical team was able to stabilize Payton and moved her to the pediatric intensive care unit (PICU).

 “Every day in the ICU, we’d stare at the breathing machine to see how many breaths she was taking on her own,” said Nick. “It was very hard to go through that.”

Soon after being admitted to the hospital, Payton’s neurologist pulled the Lumberts aside to show them the scans of her brain. They revealed four small spots, an encouraging sign that the damage wasn’t as dire as it could have been. Still, it was unknown if she’d ever walk or talk again.  

On day five in the PICU, something unexpected happened.

“I remember walking through the doors and we hear all of the alarms going off and we take off running to her room,” said Brandy. “She had stood up next to the bed and was ripping everything off. She looked right at us and I was flabbergasted!”

And just like that, hope began to shine on the Lumbert family.

Soon after, Payton was transferred to Cook Children’s rehabilitation unit where she embarked on the long road to recovery. Over the next six months, she underwent treatment at three different hospitals across Texas.

Now, four years later, she is returning to Cook Children’s to say ‘thank you’ to the people who saved her life.

 On Thursday, September 1, 2022, Payton and her family were reunited with the doctors, nurses, and care team members who cared for her at Cook Children’s. This emotional reunion was requested by Payton, who is now a 17-year-old high school senior. She has a job, drives a car and is planning to pursue a career as a veterinarian.

The Lumberts recently shared their story on the Raising Joy podcast in hopes of encouraging other families who may find themselves in a similar situation.

 When asked what message she has for kids and teens who are struggling with their mental health, Payton said “Get help.”

 Their episode is now available on all major podcast platforms including Apple, Google and Spotify.

 September is Suicide Prevention Awareness Month.

 Here are some signs to be aware of – though not every suicide attempt will display signs. This is why it’s important to talk to children and teens about suicide, whether you suspect they are suicidal or not. 

1. Preoccupied with death (writing, drawings)
2. Talking about feelings of hopelessness
3. Talking about being a burden to others
4. Telling loved ones goodbye
5. Decline in performance
6. Giving prized possessions away
7. Isolating and withdrawing
8. Acting highly anxious or agitated
9. Acting reckless and taking risks
10. Rages
11. Changes in sleeping and/or eating
12. Use of alcohol/drugs
13. Dramatic changes in personality and/or appearance

If you feel your child needs help, please click here to find a Cook Children's Behavioral Health location near you. You can also address your concerns with your child’s pediatrician, psychologist or therapist.

The 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) offers 24/7 call, text and chat access to trained crisis counselors who can help people experiencing suicidal, substance use, and/or mental health crisis, or any other kind of emotional distress. People can also dial 988 if they are worried about a loved one who may need crisis support.

Raising Joy is part of Cook Children’s Health Care System’s Joy Campaign, a communications initiative aimed at preventing youth suicides. For more information about the Joy Campaign, visit cookchildrens.org/joy.

New episodes of the Raising Joy podcast will be available each Tuesday. It is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

Her head and arms lift. Her eyes open, turned to the side. Her body goes rigid and she loses bladder control. Sometimes she moans; usually the episodes unfold silently. The next morning, Baylie doesn’t remember.

“It’s very tough to watch. It never gets easy,” said her mom, Brandi Williams. “Most of the time she just goes right back to sleep.”

Diagnosed at age 2, Baylie is among the estimated 12% of epilepsy patients who experience nighttime seizures. An electroencephalogram (EEG) monitoring study at the epilepsy monitoring unit at Cook Children’s found that her seizures occur six or seven times a night – even more than her parents initially realized.

Dave Shahani, M.D. an epileptologist at Cook Children’s, explained that nocturnal seizures cause special concern because of the risk that a child in the throes of a seizure might suffocate on fluffy bedding or soft toys.

“It’s not that they are any different from other seizures per se, but we tend to worry about them more,” he said. Seizures while sleeping are less likely to be witnessed by a parent, he pointed out. “Any number of nighttime seizures is a high number. Even one a month is a high number.”

The U.S. Centers for Disease Control and Prevention estimates that epilepsy affects 470,000 children nationwide. Irregular electrical activity in the brain characterizes this chronic disorder, which encompasses a wide variety of seizure types. Symptoms of epilepsy can look very different in different people.

Someone having a seizure might collapse, twitch or spasm, stiffen, blink rapidly, stare into space, or lose consciousness, for instance. Nighttime seizures pose the added challenge of sleep disruption. And studies have indicated a higher risk for Sudden Unexplained Death in Epilepsy (SUDEP) during sleep. SUDEP is poorly understood but suspected to involve cardiac or respiratory complications.

Damian Campbell, D.O., a pediatric neurologist at Cook Children’s in Prosper, said Baylie’s frequent and consistent sleeping seizures stand out as “the most extreme case that I’ve experienced.” But he’s encouraged about the prospect of surgically correcting her epilepsy.

Doctors think Baylie’s seizures originate from the right frontal lobe of her brain due to focal cortical dysplasia, a jumbling of the neuron cells as her brain developed before birth. In a surgical procedure scheduled for December, her medical team expects to pinpoint the abnormality’s exact location – and eventually reduce or even eliminate her seizures.

In November, as we observe Epilepsy Awareness Month, we’re highlighting Baylie’s story to illustrate the complexity of epilepsy, to share hope, and to feature the work of the neuroscience experts at Cook Children’s who treat the seizure disorders of more than 13,000 infants and children per year.

Starting to Find Answers

Baylie loves to sing and dance, can charm someone she’s just met, and in her dad’s words “she’s amazing.” So the discovery of their daughter’s epilepsy several years ago came as a surprise to Jabyrie and Brandi Williams. None of Baylie’s five older siblings has seizures. And judging just by appearance, nothing seemed obviously wrong with the toddler. But the family noticed occasional behavior they thought was unusual.

“Every once in awhile she would start staring off into space and then she would start laughing after she came out of it. We would snap our fingers and say ‘Baylie, Baylie,’ and she wouldn’t say anything,” Brandi remembered.

“We didn’t think it was anything at first,” Jabyrie said. “She would look around and laugh, and we thought it was an imaginary friend.” The Williamses referred to these strange bouts as “blanks.”

Then they picked up on other odd signs… dizziness after her blank spells, dark circles under her eyes, and complaints about feeling tired. She struggled to follow directions at home. At gymnastics, she couldn’t focus enough to complete a step-by-step routine. “Walk the beam and then do a handstand and do a cartwheel,” Brandi said. “Her mind couldn’t process doing those things in a certain order.”

After a referral from a pediatrician, Baylie underwent various tests, including an MRI, spinal tap and electroencephalogram (EEG). In 2020, they sought a second opinion at Cook Children’s, where she came under the care of both Dr. Campbell and Dr. Shahani. Further tests showed that Baylie’s “blanks” and trouble concentrating stemmed from the disorganized layering of neuron cells on one side of her brain.

She currently takes two medications that mostly control her daytime seizures. At full-day pre-kindergarten she hasn’t had a seizure during nap time. But a stressful day, Brandi said, might trigger a breakthrough seizure during waking hours. And the nighttime seizures still happen regularly.

“Focal cortical dysplasia can’t be fixed with medication. You can suppress the seizures, but you can’t fix anything. Surgery is the only thing that could fix it,” Brandi said.

Dr. Campbell characterized Baylie as a good candidate for epilepsy surgery. He cited the higher likelihood for surgical success in patients whose seizures onset lies in just one part of the brain instead of generalized in multiple locations. A lesion in Baylie’s right frontal lobe “as a result of being malformed, doesn’t respect the organization of how the brain produces electricity,” Dr. Campbell said.

Dr. Shahani concurred in the assessment of good surgical potential. The four medications Baylie tried didn’t stop her nighttime seizures. “Without any change in her treatment plan, she will continue to have seizures for the rest of her life,” he said.

Next Step, Surgery

A stereo EEG is scheduled for Dec. 13 to precisely locate the source of her brain’s erratic electrical waves. Daniel Hansen, M.D. a neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center, will make small incisions in Baylie’s scalp and skull to place electrodes that record brain activity. Those findings could pave the way next spring for either a resection (removal of a small amount of brain tissue), or thermal ablation (a probe that uses heat to destroy the area causing the seizures). Cook Children’s performs more than 30-40 epilepsy surgeries annually.

The odds are stacked in Baylie’s favor. Dr. Shahani explained that the target area doesn’t involve critical parts of her brain that control language or motor skills. ‘She presents as a very good candidate for potential seizure freedom,” he said.

For epilepsy patients whose seizures resist medication, alternatives may include dietary therapy or implanted devices such as vagus nerve stimulators. “Early recognition and early treatment always lead to better outcomes,” Dr. Shahani said. And from Dr. Campbell: “Earlier detection is better because uncontrolled seizures can affect patients cognitively over time.”

They encouraged parents to call a neurologist or epileptologist if they suspect their child might be having seizures. Videos can be a valuable diagnostic tool by capturing a recording of the twitches, spasms, “blanks” or other concerns. Seizures often go undiagnosed or misdiagnosed because they occur so uniquely in each person, Dr. Shahani said.

“It makes it challenging and extremely rewarding to help identify what is a seizure. Parents are our greatest asset because they know their child the best.”

Back in Rowlett, the Williams family keeps Baylie on an evening routine – dinner, medicine, bath, in bed by 8:30pm. She sleeps in her own bedroom, protected from falls by a guard around the edge of her mattress. A camera keeps watch.

“In the beginning she was sleeping with us because we were nervous,’ her mom said. “But we had to come to the agreement that we have to let her be a kid.”

Brandi and Jabyrie expressed optimism that this treatment path will put an end to Baylie’s nighttime seizures and allow her to come off the meds. They urged other parents to know that the signs of epilepsy can be silent and easy to miss. Their advice? Ask questions, pay attention to seizure triggers, and advocate for your child.

“We want answers, and that’s what Cook Children’s gave us,” Brandi said. “If we never would have switched to Cook Children’s we just would have been chasing seizures for the rest of her life. We want her to be as independent and normal as possible. Being on medication for the rest of her life just wasn’t what we wanted for her, if we could help it.”

Left uncontrolled over time, seizures can cause buildup of brain scarring, Dr. Campbell said. Nighttime occurrence interferes with the restorative sleep that children need. He applauded the Williamses for their willingness to follow the recommendation for surgery to stop Baylie’s seizures.

“I hope that this article helps other families with the expected fear with hearing someone say ‘Maybe we should consider surgery,’” Dr. Campbell said. “It is a scary conversation. But I think over time we’ve become optimistic that her story will make it less anxiety-producing for families.”

If you’re out and about in Fort Worth this evening, you may notice some recognizable landmarks glowing purple. While it’s not uncommon to see the city awash in this color in support of TCU’s Horned Frogs, there’s a different reason for the lights shining tonight. November is National Epilepsy Awareness Month and purple is the official color of the cause. In addition to Cook Children’s Medical Center, Fort Worth’s 7^th St. Bridge, Will Rogers Tower, Dickies Arena, TCU Stadium and the new City Hall (previously the Pier I Imports Building) will all glow purple.

“Epilepsy will affect one in 26 people during their lifetime, and 50,000 kids in Texas each year,” said M. Scott Perry, M.D., head of Neurosciences at Cook Children’s. “It’s my personal mission to do everything I can throughout the year, but especially during the 30 days of November, to bring awareness to this common disorder.”

Besides spearheading the effort to light Fort Worth purple, Dr. Perry can be seen sporting his purple Vans tennis shoes this month. He’ll also toss the coin at Paschal High School’s football game on Nov. 4, which will be dedicated to raising awareness of the disorder.

Currently, 3.4 million people live with active epilepsy in the U.S. If you’re interested in learning more about epilepsy, check out some of these stories we’ve covered on Checkup Newsroom:

• Cook Children’s Opens Clinical Trial For Investigational Treatment of Rare Epilepsy Disorder
• Teen Becomes First in North Texas to Undergo Landmark Brain Surgery for Epilepsy
• Landmark Brain Surgery Research at Cook Children’s Published in Annals of Neurology
• A Simple Seizure Plan Can Save a Life
• Teen Seizure Free For The First Time in 16 Years Following Brain Surgery
• Cook Children’s Patient Becomes First in North Texas Implanted With Smart Device to Control Seizures

Sickle Cell Awareness Month is recognized each September. For many of the more than 100,000 Americans living with the disease, acute painful episodes and chronic pain happen year-round. As if living with sickle cell disease (SCD) isn’t tough enough, they often face stigmas that come with fighting the disease.

People with SCD suffer from sickle cell pain crisis. These symptoms can lead to absenteeism from both school and work. This may create a false impression that the person with SCD is “lazy.”

Twelve-year-old Daylen Parrish, a patient at Cook Children’s Medical Center since 2009, understands both the pain and stigmas all too well. He was 10 days old when his family first met Clarissa Johnson, M.D., a hematologist/oncologist and lead physician at Cook Children’s Sickle Cell Program.

Daylen’s mother, Erikah, says they met Dr. Johnson on her first day of work at Cook Children’s, and though that moment was scary, that wasn’t where their story began.

Erikah and her husband both carry the sickle cell trait, which one in every 13 Black or African American children are born with. Since they were aware they were carriers, the couple had conversations about not having children because they knew their child would likely be born with SCD. They were surprised when they found out they were expecting and knew they had a long road ahead of them.

Daylen spent the first few years of his life in and out of Cook Children’s.

“It became our second home,” Erikah said. “We were there eight to 10 times throughout the year. It was hard as a mother because when he was young and couldn’t speak, I didn’t know if he was crying because he was a baby or because he was in pain.”

She says one thing that she vividly remembers is the learning curve and the hard days of ‘trying to get it right and figure things out.’

Erikah says Dr. Johnson was good to her family from the very beginning.

“I remember her telling me we were going to try everything we could to make sure Daylen lived as normal as a life as possible,” she said.

“I've been managing his care since he was a newborn,” Dr. Johnson explained. “His parents have always been very receptive to any sort of new therapies that are out there and they just want what’s best for him. We all want what’s best for him, and want him to live his life, even with SCD.”

Daylen would agree Dr. Johnson has kept her promise to do just that.

“I love being at Cook Children’s,” he said. “It’s like a hotel, and better than being at school, except the pain part. But it’s a nice break, who wouldn’t like a break with good food?”

As Daylen has gotten older, his trips to Cook Children’s have become less frequent, but he’s faced new challenges.

“I can’t do what my other friends can do at school,” Daylen explained. “Sometimes at recess, I have to stop and take a break. Or if I am playing with my friends outside, I have to stop a lot.”

Daylen says this is because he becomes tired and cannot push his body to keep going like the rest of his classmates or friends. He says this has been hard for him because sometimes he feels like he doesn’t fit in and can’t do the things others can do.

Erikah says she is proud of her son every day for his fight through daily tasks and SCD episodes. Additionally, she says Daylen has the most supportive and kind friends that anyone would be blessed to have and she is thankful for them being inclusive to her son. 

Another challenge Daylen faces is the daily medications and doctors’ visits that he says other kids don’t have to go through.

“He takes hydroxyurea, which is one of the common therapies that we use for patients with sickle cell,” Dr. Johnson explained. “Generally, that has worked out well for him. There's a newer drug, not FDA approved yet for his age, but he was able to participate through a clinical trial and is receiving that, and that does seem to potentially be offering him some benefit also.”

Daylen says he understands the importance of having to take his medications, go through clinical trials and attend his doctor’s appointments, but he hopes for a day when things can be normal for him.

“All the doctors and nurses have become family to us,” Erikah said. “From day one, I have never felt alone at Cook Children’s and have met other families who have children with SCD and it has made this process so much easier for us. We are grateful for Cook Children’s.”

“I love the doctors and nurses at the hospital,” Daylen said. “I am glad they help me when I am sick.”

Dr. Johnson says fostering those relationships with patients and patient families is important.

“It helps when you have a relationship with a family, to be more of a partner in care,” Dr. Johnson said. “There is built-in trust there when you’ve been with a family through multiple scenarios, so it helps when you have a relationship.”

Daylen and his family are hopeful there will one day be a cure for SCD, but until then, they will continue their fight and share their stories to encourage others.

For more information on SCD, listen to Dr. Johnson on “Unraveling the Complexities of Sickle Cell Care” on Cook Children’s Doc Talk podcast.

What is sickle cell disease (SCD)?

Sickle cell disease (SCD) is an inherited blood disorder in the United States. It causes the body’s red blood cells to harden and become shaped like crescents, or sickles, instead of resembling healthy, round discs. Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These changes in cells can cause repeated episodes of severe pain, organ damage, serious infections, or even stroke. A person with SCD is born with it. People cannot “catch” SCD from being around a person who has it.

This serious disorder is most common among people whose ancestors come from Africa, South and Central America, the Arabian Peninsula, India, and Mediterranean countries, including Turkey, Italy, and Greece. In the U.S., it is especially prevalent in the African American population, where an estimated one in 500 people has the disease. This often-invisible and rare disease impacts over 100,000 people— most of whom are of African descent and will require regular blood transfusions to help manage their disease. 

This is why the WATCH coalition and two of its partners, Connections Wellness Group and the Denton County Behavioral Health Leadership Team, are working together to spread messaging from the Okay to Say™ campaign.

Okay to Say is an award-winning public awareness campaign, initiated by the Meadows Mental Health Policy Institute and supported by The Hackett Center for Mental Health. Their message is simple: it’s okay to talk openly about mental health. Hope begins with open and honest conversations about mental health between trusted family members, friends, and other loved ones. WATCH, Connections Wellness Group, and the Denton County BHLT invite you to join us in working together to spread these messages throughout Denton County and the North Texas region so every child understands that it is Okay to Say.

Speak up by asking friends and family how they are feeling. Or, share how you are feeling.

Share hope by becoming a mental health supporter of someone close to you who might be struggling. There are great supporter tips on the Okay to Say website such as: Ask & Listen, Focus on Strengths, and Don’t Try to Fix.

Add your voice by sharing your journey at www.okaytosay.org or on social media using the hashtag #okaytosay.

WATCH, Connections Wellness Group, and the Behavioral Health Leadership Team have raised awareness of the Okay to Say campaign by purchasing a billboard in Denton on I-35W (Post Oak exit), sharing messages on social media, and passing out bookmarks with Okay to Say messaging at Denton County libraries. We’ve also purchased a billboard in Denton on I-35W Northbound (Post Oak exit), resulting in approximately 483,610 folks, age 18 and older, seeing this important message every week for 6 months!

The Seizure Recognition and First Aid Certification program helps individuals understand and recognize types of seizures, identify signs and symptoms of each, learn how to administer first aid when witnessing a seizure and outlines when to call for help.

“We sought to develop the program in-house knowing that Cook Children’s was an ideal venue to demonstrate how a company could institute wide-scale implementation of the Epilepsy Foundation's training to get large numbers of people educated,” said M. Scott Perry, M.D., epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children’s. “Several of our nurses completed the necessary instructor education and, subsequently, took the training and made it an online course available to our staff. We’re encouraging all staff to complete the training in an effort to make Cook Children’s seizure safe.”

Dr. Perry sits on the professional advisory board for the Epilepsy Foundation of America and chairs the Public Health and Education Committee that reviews the course’s content.

About one in 10 people may have a seizure in their lifetime, according to the Centers for Disease Control. Although common, seizures are as varied as the individuals they impact. While some may result in a visible loss of consciousness or uncontrolled movement, others may be invisible to those who lack experience with or are unaware of the nuances of seizure disorders.

“This program breaks through stereotypes about seizures, even among health care professionals,” said Aubrey Esparza, MSN, RN, CPN, neurosciences clinical nurse leader at Cook Children’s. “Seizures can present in many different ways. Some can be subtle, so it is important to know the signs to look for.”

Oftentimes, unrecognized seizures are incorrectly labeled as behavioral problems, attention deficits or even substance abuse, resulting in a lapse of timely medical treatment, according to Esparza. Knowing what to look for and being able to describe the seizure activity in detail is key in getting individuals the help they need. The certification program emphasizes the importance that seizure description plays in diagnosis and treatment and the types of information health care providers need from a witness for better diagnosis and treatment.

“When a seizure is presumed to be something else, a child is unable to receive timely medical treatment," Esparza said. "Knowing what to look for and being able to describe that seizure activity in detail gives providers so much information as to how to diagnose and treat an individual. The more we know about what an individual’s seizure looks like, the better.”

Certification was first offered in-house to Cook Children’s inpatient neurosciences staff members in September. Since then, 56 members of the neurosciences team have completed certification—now a mandatory part of their continuing education employee training. But understanding how to recognize a seizure is also very valuable for those on general medical floors and in high-traffic areas like patient registration or the cafeteria, and the training is suitable for both medical professionals and non-medical employees. All Cook Children’s staff are encouraged to complete the optional one-hour course through the hospital's employee education portal.

The certification program is also offered to families of patients at risk for seizures or newly diagnosed with epilepsy. So far, nine families have completed the training and have reported increased confidence in managing seizure activity as well as the ability to better recognize and describe seizures. Even families who have children with epilepsy for multiple years have reported that the course is extremely valuable. Training for patient families is currently offered once a week via Zoom and will be provided in-person once it is safe to do so.

The Epilepsy Foundation’s course is open to any adult interested in increasing their confidence in recognizing seizures and providing seizure first aid. It is designed for anyone who works, lives or plays in a setting where seizures could occur or who interacts with someone who has seizures, according to the Foundation.

For more information on how you or members of your organization can become Seizure Recognition and First Aid Certified, visit www.epilepsy.com/firstaid or contact your local Epilepsy Foundation.

Miller Queen suffers from a severe and debilitating form of epilepsy known as Dravet syndrome, but you’d never know it by looking at him. At 7 years old, Miller is doing things that never seemed possible like playing soccer and going to school.

“Daily life when you don’t have seizure control is just a rollercoaster,” his mother Chelsea Queen told NBC 5. “You’re kind of always on edge waiting on the next seizure to happen.”

Starting at 6 months old, Miller was having as many as 10 seizures a day. Every treatment he tried failed and his parents were afraid to take their eyes off of him for even a moment.

Then, they found Cook Children’s and M. Scott Perry, M.D.,  an epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children's.

“When you deal with epilepsies that are so difficult to control, it certainly becomes difficult not to feel that there’s not an answer,” Dr. Perry said.

Miller was enrolled in a clinical trial for the drug fenfluramine, which was once used as a popular appetite suppressant. Only a handful of hospitals nationwide were involved in the trial and Cook Children’s happened to be the only one in Texas. The drug completely stopped Miller’s seizures.

“The treatment completely changed his life,” Queen said in the interview with NBC 5. “He’s always been such a happy kid but now he’s able to experience life to the fullest.”

Overall, the clinical trial showed fenfluramine reduced seizures on average by about 70%. The research helped lead to approval from the Federal Drug Administration, opening up fenfluramine as a treatment for everyone with Dravet syndrome.

“The next medication to try and make you seizure-free is probably 2%, but you know what, you might be that 2% so that’s why we keep looking for it,” Perry said.

For Miller’s parents, they know this to be true.

Matt Queen, Miller’s father told NBC 5 “If something doesn’t work, don’t lose hope.”

On Nov. 1, purple lights will shine at the following locations:

• Cook Children’s Medical Center
• Sundance Square
• 7^th Street Bridge
• Will Rogers Tower
• Pier I Imports Building
• Shops at Clearfork

In addition, a ‘#1in26’ selfie statue will be displayed at the north entrance of Cook Children’s Medical Center, next to the 7^th Ave. parking garage. We encourage patient families to take a photo with the statue and share it on their social media pages with the hashtag #CookChildrens1in26.

Throughout the month of November, we will also be sharing epilepsy stories on our online newsroom, Checkup Newsroom. Topics will include a new seizure recognition and first aid program currently in place at Cook Children’s, which aims to train all staff members how to recognize and help a person having a seizure. We’ll also highlight the incredible career of pioneer neurosurgeon, David Donahue, M.D.

About Cook Children’s Epilepsy Program

Cook Children's Comprehensive Epilepsy Program is one of the leading and most advanced pediatric epilepsy programs in the country. 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.

Our program coordinates the skills of a highly specialized team of experts across neurosciences and Cook Children's Health Care System. This team is made up of epileptologists, neurologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, nutritionists, nurse educators, social workers and Child Life specialists, all working together to ensure children with epilepsy receive the most accurate diagnosis and advanced treatment available.

More than 13,000 infants and children with seizures are treated at Cook Children’s each year. Annually, we perform more than 6,000 EEGs and 40-50 epilepsy surgeries, making Cook Children's Comprehensive Epilepsy Program one of the busiest pediatric epilepsy centers in the nation. And with specialized diagnostic tools, like our MEG, the newest generation of advanced imaging technology is now available to even our youngest patients.

For more information, visit our website.

Dan Guzman, M.D., a Cook Children’s emergency physician, called the day gut-wrenching for the victims, their families, and the medical staff that took care of the kids, ranging from ages 3 to 14.

Gun awareness and gun safety is a passion for Dr. Guzman. He is the medical director of the Aim for Safety program at Cook Children’s, which promotes firearm safety for children. The program is a multi-step interactive experience that provides parental awareness and teaches children the steps they should take when they encounter a firearm.

“I think most people think this ‘won’t happen to us’ because we’ve taught our kids to never touch guns,” Dr. Guzman said. “But if you aren’t taking the proper precautions as the adult and parent, it’s probably only a matter of when, not if, your life may be affected by an unintentional discharge involving someone you know, and maybe even your child.”

Firearm-related fatalities are a top 3 cause of death among children in the United States.

Dr. Guzman said before the weekend, the medical center staff sees about one child per week. Already in 2019, three gunshot wounds treated at the medical center have been fatal.

“Unfortunately, the tragedy of children falling victim to unsecured firearms continues to happen daily,” Dr. Guzman said. “These preventable incidents and the pain and suffering they inflict can be reduced by properly securing your firearms.”

As part of the program, Dr. Guzman offers these safety tips to follow:

The 3 Ts of firearm safety and children

Talk – This includes your family, neighbors and friends. When your child visits other homes, ask the owners if there are guns in their homes and how they are stored. Dr. Guzman said this question is not to be insulting, but to keep your children safe from unsecured firearms.

Teach – Have a conversation with your kids about what to do if they see a gun:

• Stop
• Don’t touch the gun
• Run away
• Tell someone

Take – Dr. Guzman is asking gun owners to take action and store their firearms properly. And, to take personal responsibility for our children’s safety.

Dr. Guzman stressed that children are curious and impulsive which can be deadly when paired with a firearm. Storing a loaded firearm under the mattress, in a bedside table or a closet is placing your family at risk, Dr. Guzman added.

The most secure place for your firearm is in a safe with the ammunition stored separately. Unsecured firearms should always be in your possession. If you are unable to purchase a gun safe, then separating the ammunition from the firearm and using a cable or trigger lock will help reduce the risk of unintentional injury to your child.

“It’s important to assess and evaluate your home injury risk and find ways to reduce the hazards in your home whether it is related to firearms, water safety, poisonings or any other safety risks,” Dr. Guzman said. “Discussing with your children the importance of what to do when they encounter a firearm can help to reduce unintentional injury in your home.