Their findings were published in March 2025 in the top-tier scientific journal Nature Portfolio Journal Digital Medicine. The article explains how the research team designed and trained a machine-learning tool to specifically locate the seizure starting point in children and teenagers.

During their two-year study, the researchers came up with an automated system that works by analyzing recordings of electrical activity in the brain. The researchers entered the data into the framework, and the system learned to identify where the drug-resistant seizures started.

“The system provides as an output to the epileptologists and neurosurgeons the brain area to resect in order for the patient to become seizure free,” said Christos Papadelis, Ph.D., Assistant Vice President of Neuroscience Research at the Jane and John Justin Institute for Mind Health at Cook Children’s Health Care System.

Dr. Papadelis teamed up with his postdoctoral research fellow Hmayag Partamian, Ph.D., to come up with the project’s concept and experimental design. Dr. Partamian developed the mathematical formulas and codes. The work took place in labs at Cook Children’s Medical Center in Fort Worth and at the University of Texas at Arlington, where Dr. Papadelis serves as Professor of Research in Bioengineering and Director of the Pediatric Brain Health and Neurosciences Center.  

The study utilized data from 43 children with drug-resistant epilepsy who underwent resective surgery. The goal of resective surgery is to stop seizures from occurring by removing the brain tissue where the seizures originate.  

Dr. Papadelis said the new AI-based tool could help improve the outcome of those surgeries by precisely defining which tissue to remove, giving those patients hope for a seizure-free future.

Where Seizures Begin

Nearly 500,000 children nationwide live with the chronic disorder of epilepsy. They suffer from seizures, which are misfiring of electrical activity in the brain. Someone experiencing a seizure might have a blank stare, muscle spasms, or loss of consciousness. Medications control seizures in about 70% of epilepsy patients. The others have what’s called drug-resistant epilepsy. 

The AI tool created by Dr. Papadelis and his team requires just five minutes of recorded brain electrical activity to determine the area of seizure origin. This presents a significant advantage compared to conventional methods that typically require recording the brain activity for several days -- or even weeks -- in order to capture a seizure.

The tool then transforms the electrophysiological data into color-coded maps of brain activity across time and corresponding these maps into active epileptic regions in the brain. Researchers trained the AI tool to automatically discriminate epileptic from healthy brain regions in these maps. Surgical resection of the epileptic regions in these brain maps can predict a good prognosis for the patient.

Dr. Papadelis pointed out important features of the automated process:

• Less chance for human error from manual interpretation of the data
• Reduced costs, time and risks from the presurgical evaluation process

“We have developed an AI, patient-specific method that automatically identifies the brain area that generates seizures in patients with drug-resistant epilepsy. This method requires little to no input from clinicians,” Dr. Papadelis said. “Our method eliminates the need for manual data inspection, reduces prolonged monitoring and enhances surgical planning.”

The study is in collaboration with Boston Children’s Hospital and is funded by a grant from the National Institute of Neurological Disorders and Stroke.

Dr. Papadelis plans to seek extra funding for the study’s next phase: applying the tool prospectively to patients who are candidates for surgical intervention at Cook Children’s.

Dr. Papadelis believes that the findings of this study represent a significant step toward improved surgical procedures for drug-resistant epilepsy.

“Such a framework would be particularly useful to epilepsy centers that lack the multidisciplinary expertise to delineate accurately and precisely the epileptogenic brain regions in complex cases,” the article states.  

Dr. Papadelis credited the dedication of all the researchers, and in particular he highlighted Dr. Partamian’s talent for scripting. The study shows direct benefits that align with the Cook Children’s Promise to improve the well-being of every child in our care and communities, he said.

“This is one of the moments that makes you feel really proud of the work that you have accomplished together with your team,” he said. “We keep our Promise to do our best for improving the lives of children suffering from devastating neurological disorders.” 

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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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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.”

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.

What is photosensitivity?

Photosensitivity is a phenomenon that occurs in approximately 3% of people with epilepsy, so this risk impacts a small percentage of people with epilepsy overall. For those with photosensitivity, exposure to certain patterns and frequencies of flashing light over a period of time may induce a seizure. For many, the trigger can be very specific and vary from person to person – certain colors or wavelengths of light, particular frequencies (often between 5-30 flashes per second), and specific patterns could be triggers.

Movies with flashing lights aren’t the only potential photic triggers in our environment. Other potential examples include:

• Strobe lights used at dances or when part of fire alarms
• Sunlight flickering off water, shining through Venetian blinds or through roadside trees
• Lights hanging down through bridges or tunnels
• Television or computer screens with rolling images

How do you know if you are photosensitive?

The easiest way to know if you are at risk for photosensitivity is through electroencephalogram (EEG) results. Often, as part of the EEG exam, patients are exposed to strobe lights at various frequencies during the study. The neurologist reviews the EEG to see if there were changes to the brainwave pattern during the lights suggesting a higher risk of seizures. This is called a photoparoxysmal response (see the image to the right). If that pattern is present, sometimes the technicians will then repeat the test using colored filters over the strobe light to see if they can make the trigger disappear. If they can, some people can wear polarized colored glasses to filter out the triggering light and avoid the photic response.

Certain epilepsy syndromes are known to have a higher association with photosensitivity. These include the idiopathic generalized epilepsies and some named syndromes below.

• Dravet Syndrome
• Juvenile Myoclonic Epilepsy
• Jeavons Syndrome
• Sunflower Syndrome
• Unverricht-Lundborg Disease

What steps can you take to avoid photic-induced seizures?

Disney did not indicate which scenes in the film may contain potential photic triggers, so the viewer must remain aware of potential triggers. There are multiple easy steps people can take to avoid photic triggers and still enjoy the film and other environments where photic triggers may be present.

• Close one or both eyes and look away during scenes with sustained flashing lights.
• If you are playing a video game or watching TV/movie and you start to get jerks in your arms/legs, turn away from the screen immediately.
• Use computer screens with glare guards.
• Turn off the autoplay features on social media (videos can automatically play on social media platforms that have strobe effects and may trigger seizures) – not sure if we want to comment on the court case Monday of Kurt Eichenwald who -was the victim of a strobe attack.
• Turn down the brightness of TV/computer screens.

While photosensitivity can be a seizure trigger for some people with epilepsy, it should not be a deterrent from enjoying these activities. Being aware of the potential for photic triggers and taking steps to avoid sustained exposure can help prevent seizures while still enjoying the event.

So go forth, grab a popcorn, and enjoy the movie – and may the Force be with you!

But in this room, the discussion isn’t about mergers or quarterly profits. Their discussions center on the quality of life for a child and matters of life and death.

The men and women meeting on this morning are part of the Justin Neurosciences Program at Cook Children’s. They meet weekly to discuss complex epilepsy cases and to plan the treatment ahead for each patient.

Sitting around the table are epileptologists, neurologists, neurosurgeons, neuropsychologists, neuroradiologists, an epilepsy program coordinator and the epilepsy research project manager.

This is a frequent occurrence at Cook Children’s. A dedicated team coming together to map out their treatment plan for their young epilepsy patients, most for whom conventional treatments have not yet been successful

“A good epilepsy program will have representation from neurosurgery, neurology, neuroradiology and neuropsychology at the least there to discuss,” said M. Scott Perry, M.D., an epileptologist and Medical Director of Neurology at the Jane and John Justin Neurosciences Center at Cook Children’s. “What is good about our team is that it is an even exchange between us all. When we gather together, we aren’t just telling each other what to do, but we are making suggestions, discussing risks and benefits and giving everyone an opportunity to ask their own questions given their unique knowledge of epilepsy. No one person runs the show. It is a team effort - always.”

The last patient discussed on this morning is Aaden Balderamos. Aaden, who will turn 3 years old in December, has been a patient at Cook Children’s since he was 2 days old when he was transported by a Cook Children’s ambulance to the Neonatal Intensive Care Unit.

Aaden was diagnosed with tuberous sclerosis complex at 4 days old after tumors were found in his heart and in his brain. He developed epilepsy soon after.

Tuberous sclerosis complex (TSC) is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations that these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.

Aaden has tried a number of treatments up to this point, from conventional medications to research trials. While each helped reduce his seizures, none got rid of his seizures completely – thus the team recommended a presurgical evaluation to see if epilepsy surgery would be an option for his family to consider. Time spent in the Epilepsy Monitoring Unit at Cook Children’s gathered tons of data, including EEGs and multiple types of brain scans, showing that multiple areas in Aaden’s brain have the potential to cause his seizures, but the data begins to point to one area as the primary cause.

The data captured from video EEG and brain scans paint a picture for Dr. Perry (neurology), Dr. Donahue (neurosurgery) and Hayden Head, M.D. (radiology). Each test characterizes the seizures in a different way – the PET scan measures metabolism and energy production in the brain, while the SPECT scan measures blood flow, and the EEG electrical activity. All contribute like colors on a canvas, to paint the picture of where in Aaden’s brain his intractable seizures arise.

For Aaden, the seizures take place in the right hemisphere of his brain. The good news is motor and language function are a distance away from where the seizures arise, so they are unlikely to be at risk during a surgery. The bad news is the pathways that control vision are located near the suspected region of seizure onset and have the greatest potential for concern for the doctors and his mother, Stephanie.

At this point, while Dr. Perry and the team have narrowed the search for Aaden’s seizures to a single section of his brain, they want to be more precise – to locate the smallest area of brain possible causing his seizures and to avoid damage to important visual pathways. They recognize they have not yet collected enough data to decide the type of surgery Aaden needs, so Dr. Donahue will perform a stereoelectroencephalography on Aaden in November.

Stereo EEG means Dr. Donahue will place thin electrodes (think piano wires) in Aaden’s head, focusing on the region of brain the presurgical workup suggested was the source of his seizures. This minimally-invasive surgical procedure will be used to help Dr. Perry identify more precisely where Aaden’s seizures begin. Dr. Donahue will place the electrodes in specific, targeted brain areas using robot assistance and imaging in the operating room.

Once those EEG leads are placed, Dr. Perry will record additional seizures and narrow down the region of brain responsible for Aaden’s epilepsy. Once those areas are identified, it will make it easier for Dr. Donahue to resect, or remove, the location or locations causing the seizures in a later surgery and make for the best outcome possible for Aaden.

Stephanie says the mere thought of her little boy requiring surgery makes her sick to her stomach. For now she’s trying hard not think about. She said she will wait until it’s closer to the surgery to get “everything together.” It’s her way of coping.

“I get really nervous, just the thought of it. Aaden’s so little. He doesn’t know what’s going on. He’s without a care in the world,” Stephanie said. “He doesn’t know he needs surgery, brain surgery. He’s so innocent. He doesn’t deserve it. It makes me sad.”

But then the mom who has watched her child suffer since the day he was born pauses. She knows this is what’s best for her son. She hopes for seizure control. It would be life altering if her child didn’t have as many seizures a day or they could go week without them. But as a mom, she can’t help but hope for so much more.

“Aaden is already such a happy, little boy. I can only imagine how much better he would feel and how different his life would be if he was finally seizure free,” Stephanie said.

Welcome to the First in a Series

More than 3.4 million people in the US live with active epilepsy and over 150,000 new cases are diagnosed each year. It sounds astonishing, but 1 in 26 people will develop epilepsy in their lifetime and over one-third of those patients will fail to respond to treatment with medication. The evaluation and treatment of epilepsy is an art form.

This is the story of one of Cook Children’s young patients and the art of treating epilepsy.

To view the entire series click below:

Part 2

Part 3 

Part 4

During the last month of Stephanie Balderamos’ pregnancy, a routine prenatal screening found cause for alarm.

The tests showed some abnormality with her baby’s heart. Doctors agreed Stephanie’s baby would need more testing once he was born.

Following his birth, a cardiac ultrasound confirmed a tumor on the heart of Aaden.

“I still thought were going to go home and I thought I would have a healthy little boy,” Stephanie said. “The doctor came in and told me they had found tumors in his heart. I didn’t think anything at the time. I couldn’t think. I just broke down crying. Then I wanted to know, ‘Is Aaden going to live?’ That’s the first thing I asked. I wanted to make sure he was going to live and get through it.”

Stephanie soon learned that Aaden will live, but he might have many problems moving forward.

Cook Children’s Teddy Bear Transport delivered Aaden from his birth hospital to the medical center where he was placed in the Neonatal Intensive Care Unit.

On the third day at Cook Children’s, Aaden was diagnosed with tuberous sclerosis complex. Tuberous sclerosis complex (TSC) is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations that these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.

“I didn’t look up his diagnosis until I got home. I didn’t sleep, I didn’t eat or anything,” Stephanie said. “We were there for four days and everything was such a blur at that point. I just remember crying the whole four days. It was pretty tough.”

Before she went home, she remembers sitting in her NICU room alone with her baby before everything changed for her.

“All the sudden several doctors came into the room,” Stephanie said. “There was a neurologist, a cardiologist, a kidney doctor and a lot more. I remember being there and this whole team comes in and spoke with me. They told me about Aaden’s diagnosis. It was very scary at first. I was there by myself and then the whole room is filled with doctors.

“But it was at that point I understood, ‘Wait a minute. I have a team of doctors here and Aaden is going to have a whole team of doctors treating him, probably for the rest of his life. This is a good thing. He has a team on his side and they are all working for him.”

With a plan in place and many more visits to Cook Children’s planned, Stephanie went home still in a bit of a daze. She had once thought these were the problems of other people. They were the kind of things you see in movies or social media, but not to you.

“Once it happens to you, this is your normal now. I have to get used to it. I have no choice,” Stephanie said. “I remember thinking, ‘How am I ever going to go home? Am I ready to take care of him on my own? Am I just going to be waiting for a seizure?’ At that point, I’d never seen a seizure before. I’d never had to deal with it. My main concern was knowing what to do. That’s when I decided I had to look this up and see what I have to do in case Aaden has a seizure.”

Stephanie began her research like any of us would – online.

She read about tuberous sclerosis complex, she looked up seizures on YouTube and she found a mom’s support group on Facebook. Through the Facebook site, Stephanie met five other moms in the area and learned that many kids survive and live long, fruitful lives with tuberous sclerosis complex.

All of Stephanie’s research prepared her for when Aaden had his first seizure when he was 4 months old. Stephanie grabbed her phone to record Aaden’s seizure. She sent the video to Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s.

The video caught Aaden’s infantile spasms, which lasted about a month and were controlled with medicine (Sabril).

But a new battle began in February of 2017 when Aaden developed focal onset seizures that continue to this day.

Dr. Perry has been a constant in Aaden’s life since he was just a few days old and he continues to be one of the little boy’s primary physicians as he turns 3 in December, 2018.

“My trust in Dr. Perry has grown over time because you know when you have the right doctor taking care of your child. I feel that about Dr. Perry,” Stephanie said. “I trust him 100 percent. Every choice I’m going to make about Aaden, I call Dr. Perry first. If he says yes to something, I do it. If he says no, I don’t. It’s just about trust.”

That faith is returned in Dr. Perry’s opinion of Stephanie. In a consult with other doctors, Dr. Perry marveled at Stephanie’s ability to notice her son’s seizures. Sometimes the seizures are almost impossible to detect, even to a trained eye. But Stephanie knows when they occur. She said she can tell by the look on Aaden’s face. It’ as if “he looking at me like, ‘Hey mom something is wrong.’”

Dr. Perry says he always listens to Stephanie because she has immersed herself in the care of her child and she’s around her child more than anyone else.

To say the birth of Aaden has been life-changing for Stephanie and other members of her family is an understatement. Their schedules run around Aaden’s schedule. Sometimes they have to change their plans if Aaden has had a seizure. Other times they have to make arrangements on who will be taking him to the doctor that day.

With so much of her life now focused on Aaden, Stephanie said she’s not the same person she was before he was born.

“Having our lives change so drastically also made me grow spiritually,” Stephanie said. “I had to lean on God for that deep inner strength to move forward. Our faith is a big part of our lives. Knowing we have God on our side to comfort us during hard times gives me peace. We have so many people who care about Aaden and are always praying for him.”

Stephanie knows that Aaden’s epilepsy has also impacted the life of her older son Eli, who is 8. Because of Aaden’s illness, the family isn’t able to go out to as many events or places as other families if Aaden isn’t feeling well. But Stephanie said Eli is always very understanding of this as well as his younger brother’s schedule and doctor appointments.

“I know being a sibling to a child with special needs is hard because of his experiences, but this has also made him very protective of his brother,” Stephanie said. “They adore each other and have a very special bond. Watching how much Eli does for Aaden melts my heart.”

With their life turned upside down, Stephanie wishes for a sense of normalcy in her home.

Eli and Stephanie have watched Aaden have seizures where he doesn’t speak, while other times he babbles incoherently. They’ve seen his lips and eyelids turn blue. They’ve seen him shaking and convulsing.

They’ve watched seizures as short as 10 seconds, while others last minutes. One seizure lasted more than an hour and half. Lately, Aaden’s eyes twitch now and sometimes he holds his eyes and head because they hurt so bad.

“When we first found out about Aaden’s illness we were in disbelief,” Stephanie said. “What made it even harder was the fact that we did not know what the future would hold for Aaden, and that is still true to this day. I wake up every day not knowing what the day will hold. Some days he might have one or two seizures, others he will have six to eight. Some days the seizures are mild, other days they are more severe and I have to use his rescue meds.

“I have held my son in my arms and watched him quickly deteriorate as he gasped for air and suddenly stopped breathing. These kind of things change a person. I am not the same person I was before Aaden was born. I remember asking myself when would things get back to normal, and then one day I realized this was our ‘new’ normal. Our days now consist of meds twice a day, therapy three times a week and a calendar full of doctor’s appointments.”

Aaden has had to be rushed to Cook Children’s by ambulance after he stopped breathing. All in all, it’s been scary and things seem to be getting worse.

But there is hope. 

Next Week: The Art of The Deal - Following the medial team through presurgical evaluation and the clinic vist to discuss potential surgical options.

But not everyone at the movie has had a good time.

Shortly after the initial release of the hit Disney movie, movie patrons began to speak out about several scenes in the film during which a villain uses a weapon designed to disorient people. The scenes feature a bright, flashing strobe effect, lasting for up to 90 seconds.

By Saturday, June 16, social media was lit up with movie-goers’ red flags about the long-awaited sequel. Many reviews and comments on the film consisted of alerts to those with epilepsy about the potential danger of seeing the film. These warnings include a memo from the Epilepsy Foundation of America stating:

“To avoid any serious medical incidents, the Epilepsy Foundation is requesting that Disney Pixar post a warning on all its digital properties, including relevant websites and social media channels, about what has been described as "flashing" and "strobe" lights in its "Incredibles 2" movie. There should be a warning of the potential effects on people with visual sensitive epilepsy or migraine features.”

These concerns stem from the knowledge that for a portion of people with epilepsy, photic sensitivity (a severe sensitivity to lights, especially flashing ones) can trigger seizures.

Photosensitive epilepsy is more common amongst children and adolescents, making parents even more concerned about the new summer blockbuster.

Disney released an advisory on Friday, June 15, to movie theaters asking them to post informative warnings about the film at the entrances of their establishments:

"Incredibles 2 contains a sequence of flashing lights which may affect customers who are susceptible to photosensitive epilepsy or other photo sensitivities."

Are my children at risk?

“What parents should know is that even if your child has epilepsy, not all patients with epilepsy will be photic sensitive,” said Scott Perry, M.D., medical director of Neurology at Cook Children’s.

The Epilepsy Foundation of America states that only 3 percent of patients with epilepsy will experience seizures caused by photic sensitivity.

“This is an individual issue. Just like one person might have a more severe reaction to a bee sting than another person, someone may have more of a reaction to this film,” Dr. Perry said. “Not everyone is going to experience adverse effects from this movie.”

For parents of children with epilepsy, Dr. Perry warns that “every patient with epilepsy has triggers, and they can show up in unexpected places. The best way to make sure your child is safe is to talk with your neurologist and make sure that in the case of a seizure, someone with your child knows what to do.”

- Article by Rylie Steppick

For more information on this topic:

• Treating Epilepsy
• Epilepsy Foundation Advises Viewer Caution Related to "Incredibles 2"
• Learn what triggers seizures
• Cook Children's Comprehensive Epilepsy Program
• Cook Children's Epilepsy Surgical Clinic
• Cook Children's Epilepsy Monitoring Unit

Compassionate Cultivation will be the first of the three licensed dispensaries to open in the state, but will be followed, in theory, by the other two companies that received licenses last year under the Texas Compassionate Use Act, which was passed in 2015.

Watch the story here. 

Fenfluramine was originally used as a weight-loss drug before being pulled from the market in 1997 with reports that it caused severe damage to the heart.

Now being used at lower dosages, clinical trials in the United States, Canada and Europe have found the drug to be highly effective in the treatment of seizures in Dravet syndrome.

The results from the randomized, double-blind, placebo controlled phase 3 trial of Zogenix ZX008 (previously known as fenfluramine) showed it to be effective in the treatment of seizures in Dravet syndrome. Dravet syndrome is a rare, devastating epilepsy syndrome of childhood presenting with multiple seizures types, often resistant to most antiepileptic drugs (AEDs).

The most recent study included 119 patients between the ages of 2-18 years. After a six-week baseline, patients were randomized to placebo, a lower dose (0.2 mg/kg/d) or a slightly higher dose (0.8mg/kg/d) group added to their existing AEDs, which remained stable throughout the study.

Seventy percent of patients had a greater than 50-percent reduction in convulsive seizures in the high dose, 41 percent in the low and only 7.5 percent in placebo. Forty-five percent of the patients who participated had more than a 75-percent reduction in the high dose, 20.5 percent in the low, and 2.5 percent in the placebo. Finally, the high dose group experienced 20.5 days of seizure freedom as the longest median duration, 14 days in the low dose and only 9 in placebo.

This is intriguing news locally because Scott Perry, M.D., an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s, is leading a second similar study at Cook Children's.

Currently, six patients are participating in the study at Cook Children's and the study remains open for enrollment. The study is open to children with Dravet syndrome with seizures uncontrolled on current AEDs.

"A number of inclusion/exclusion criteria are required to be selected for the trial. Patients may not be using cannabidiol (CBD) and they can’t have preexisting cardiac abnormalities because of past cardiac valve problems with the drug used as a diet pill," Dr. Perry said. "Based on the early open label results published from Belgium which prompted this present study, I’m quite excited. I’m pleasantly surprised that the results of this blinded/controlled trial were very favorable, much like the early open label results suggested. These children have a catastrophic form of epilepsy for which seizure control is very unlikely. This drug has demonstrated significant reduction in seizures which would be considered successful in any epilepsy syndrome. The results are that much more impressive given the difficulty these patients have in gaining seizure control.”

​

About Our Epilepsy Surgery Center

Cook Children's is a recognized Level 4 epilepsy center. 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 to learn more.

The Food and Drug Administration has published results of an ongoing study that found cannabis oil can dramatically decrease the number of seizures in some epileptic children.

A Fort Worth family, who is part of the trial, says it changed their lives.

Read the full story here.

The FDA's lab found inconsist ammounts of belladona, "a toxic substance, in certain homepathic teething tablets, sometimes far exceeding the amount claimed on the label." The agency warns that homepathic teething tablets containing belladonna pose an unnecessary risk to infants and children and urgests consumers not to use the products. 

The FDA contacted Standard Homeopathic Company, the manufacturer of Hyland's homeopathic teething products, to ask for a recall of its homeopathic teething tablets products labeled as containing belledaonna for protection of the users. So far, the company hasn't agreed to a recall, but the FDA is asking parents to stop using these products. 

Homeopathic teething products have not been evaluated or approved by the FDA for safety or effectiveness. The agency is unaware of any proven health benefit of the products, which are labeled to relieve teething symptoms in children. InSeptember 2016, the FDA warned against the use of these products after receiving adverse event reports.

Last year, Buzzfeed News reported that the agency had examined more than 400 adverse event reports and 10 deaths connected to homeopathic products in the last six years.

Please seek medical care immediately, if your child experiences seizures, difficulity breathing, lethargy, excessive sleepineess, muscle weakness, skin flushing, constipation, difficulty urinating or agitation after using homeopathic teething products.

Homeopathic teething products are labeled to treat the pain or irritability associated with teething, however no study has verified their effectiveness. The FDA has previously recalled teething tabs because they contained an inconsistent amount of belladonna. This is important because even small amounts of belladonna could be toxic, even deadly in a child.

Homeopathic medicines are made by taking a potentially active ingredient, such as belladonna, and diluting it thousands and thousands and thousands of times. For instance, the amount of belladonna in a commercially available teething tab is supposed to be: 0.0000000000002mg of Belladonna alkaloids. If you are thinking, “How could that small amount of anything actually do ANYTHING?” You would be right. Those who prescribe, make or sell homeopathic products claim that despite the dilution, the solution continues to maintain an imprint or memory of the original substance. This statement goes against anything that we know about science (or basic common sense for that matter).

So, why are parents still using them? Because babies get fussy and it’s hard and it causes anxiety and you want to fix it. But, can we be sure that teething actually causes any predictable symptoms? It’s difficult to say. Some studies suggest there might be a day or two of fussiness around the time of tooth eruption, but the idea that babies are fussy for months because of teething has not been found to be true. This is one of many teething myths that are out there.

Treating teething symptoms (even if they are real) probably doesn’t work and many teething treatments can cause dangerous side effects … teething gels with benzocaine can cause your baby to turn blue and amber teething necklaces have no plausible explanation for how they might work and could post a strangulation or choking risk. Even treating with acetaminophen or ibuprofen is not risk free.

If you have given teething tabs and notice any side effects such as those mentioned by the FDA report, call your pediatrician immediately. Watch for seizures, difficulty breathing, lethargy, excessive sleepiness, muscle weakness, skin flushing, constipation, difficulty urinating or agitation.

If you suspect your baby has teething pain, allow them to chew on their hand or on hard objects for comfort.

No other treatment is required.

About the author

Justin Smith is a pediatrician and the Medical Advisor for Digital Health for Cook Children's in Ft. Worth, Texas. He has an active community on both Facebook and Twitter as @TheDocSmitty and writes weekly for Cook Children's checkupnewsroom.com. His interest in communications started when he realized that his parents were relying more on the internet for medical information. He believes that strategic use of social media and technology by pediatricians to connect with families can deepen their relationship and provide a new level of convenience for both of their busy lifestyles. Dr. Smith’s innovative pediatric clinic, a pediatric clinic “designed by you,” is set to open in Trophy Club in the fall of 2016.

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. 

Once people have heard my reasoning, they can get on board that fever isn’t as big of a deal as they once thought except for one MAJOR question:

What about febrile seizures?

The bottom line is that febrile seizures for the most part have to do with genetics and other uncontrollable issues. It has very little to do with the parent’s treating or not treating fever. Basically some kids are simply more likely to have them than others. You might just consider it a bit of bad luck.

On that note, here are 13 facts about febrile seizures:

1. Seizures can only be classified as febrile seizure if they happen when the child has fever.
2. Most febrile seizures occur on the first day of illness (often before the family knows the child has a fever).
3. The child cannot have a history of seizures or an infection that causes inflammation of the brain (like meningitis).
4. Febrile seizures occur between the ages of 6 months to 6 years (most commonly 12-18 months).
5. Boys are slightly more likely to have febrile seizures.
6. About 1/3 of all kids who have a febrile seizure will have another febrile seizure in their lifetime.
7. Kids with febrile seizures are only slightly more likely to have non-febrile seizures (only 1-2 percent).
8. Febrile seizures involve whole body shaking. If it’s just one sided or one body part, other causes should be considered.
9. Most febrile seizures are less than five minutes.
10. Head imaging (CT or MRI) and EEG (which look at brain activity) are not necessary with febrile seizures.
11. Treatment at the time of a febrile seizure is not necessary if less than 5 minutes.
12. Children with febrile seizures do not need to be admitted to the hospital unless the underlying cause of the fever makes it necessary.
13. Trying to prevent febrile seizures by treating fever aggressively has not been shown to be effective.

These are the 13 facts that I walk through with all of my families who have experienced a febrile seizure.

Hopefully knowing the facts will decrease some of the fear and relieve some of the guilt that has been placed on them for not preventing febrile seizures by catching fever in time.

About the author

Justin Smith is a pediatrician and the Medical Advisor for Digital Health for Cook Children's in Ft. Worth, Texas. He has an active community on both Facebook and Twitter as @TheDocSmitty and writes weekly for Cook Children's checkupnewsroom.com. His interest in communications started when he realized that his parents were relying more on the internet for medical information. He believes that strategic use of social media and technology by pediatricians to connect with families can deepen their relationship and provide a new level of convenience for both of their busy lifestyles. Dr. Smith’s innovative pediatric clinic, a pediatric clinic “designed by you,” is set to open in Trophy Club in the fall of 2016.