From 30 Seizures an Hour to Hope for a Seizure-Free Future

11-year-old DeAidyn receives life-changing care from expert neurosurgeons at Texas Children’s Hospital North Austin Campus. 

DeVonte’s son, DeAidyn, didn’t experience his first seizure until he was seven years old. He was sitting next to his grandmother when his eyes went blank and his body started shaking. Terrified, she called 911. DeAidyn was rushed to the hospital and ultimately diagnosed with epilepsy.

“Prior to that, DeAidyn was just a normal child,” his father shared with the Austin American Statesman who ran a feature story about DeAidyn and his life-saving journey at Texas Children’s Hospital. 

For the next few years, DeAidyn’s seizures would come and go unpredictably, and they started to take a heavy toll on his mental health. “He started slowing down. He started getting timid,” his father told the Austin American Statesman. By the time he was old enough to enroll in the 5^th grade, DeAidyn — who’d always been on par with his peers — had plunged down to a second-grade reading level.

“If you think of seizures in terms of the Richter scale used with earthquakes, DeAidyn had the highest Richter scale,” said Dr. Meena Vessell, a pediatric neurosurgeon at Texas Children’s Hospital in Austin. “It not only causes damage to the brain and impairs cognitive function, it puts a child’s life in danger.” 

Last year, DeAidyn fell and hit his head during a seizure, which resulted in emergency hospitalization. During his stay, his seizures accelerated. Just as his family was getting ready to take him home, he started having 30 seizures an hour and needed to be put into a medically induced coma. 

"He was having back-to-back seizures," DeVonte told the Austin American Statesman. "He couldn't come out of the seizures."

The difference is life-changing

When nothing else was working, DeAidyn was transferred to Texas Children’s in Austin. The campus, which opened last year as Texas Children’s first hospital outside of the Greater Houston area, is backed by the world-renowned, cutting-edge research that distinguishes Texas Children’s Epilepsy Center. Recognized by the National Association of Epilepsy Centers (NAEC) as a Level 4 epilepsy center, Texas Children’s Epilepsy Center is home to a number of specialized programs, including:

• Epilepsy Surgery Program
• Ketogenic Diet Program
• New Onset Seizure Clinic
• Epilepsy Neurostimulation Clinic

In addition, Texas Children’s revolutionized surgical care for epilepsy with the development of minimally invasive laser ablation surgery.Since 1992, Texas Children’s has been pioneering research through the Gordan and Mary Cain Pediatric Neurology Research Foundation and its epilepsy-focused Cain Labs.  

Leaders in research and therapy development for epilepsy, neuropsychiatric conditions and mood disorders  

Epilepsies and other seizure-related disorders take a devastating toll on more than 50 million patients globally. It is estimated that one-third of patients are unresponsive to any medications. Children with epilepsy run a higher risk of learning and mood disorders, gastrointestinal issues and a host of other life-diminishing complications. This means in the United States alone, about 100,000-150,000 children are in urgent need of new types of anti-seizure medication. The annual cost burden of epilepsy is estimated to range from $9.6 to $12.5 billion. A significant percentage of the costs are associated with pediatric catastrophic epilepsies since they arise early in life and result in life-long disabilities. At the Cain Labs at Texas Children’s Duncan Neurological Research Institute, pre-clinical research has led to a robust pipeline of discoveries identifying the underlying biological causes of catastrophic epilepsies and related disorders. For the past 30 years, the Cain Labs have led the way in epilepsy research, making transformative discoveries that have successfully identified causative genetic mutations and biological pathways.  

“My goal is to expand the labs’ vision,” shared Dr. Sameer Sheth, Director of the Cain Labs at Texas Children’s, “to include systems-level neuroscience and neuromodulation approaches so that we aspire not only to cure those childhood epilepsies that are curable, but also to treat several of the cognitive, emotional and psychiatric comorbidities from which these patients suffer.”

A second chance at life for DeAidyn

The pediatric neurosurgery team at Texas Children’s Hospital in North Austin first implanted  DeAidyn with a vagus nerve stimulator. The device, which sits under the skin in the chest, sends electrical signals to the brain through the vagus nerve and effectively treats epilepsy.   

“The stimulator lessened his seizures to the point where we could remove his breathing tube,” said Dr. Vessell. “But he was still having too many  seizures, and he needed a bigger operation.”

The team recommended a corpus calostomy surgery to remove the connection between the two hemispheres of DeAidyn’s brain. Although his family was understandably apprehensive, they were assured that DeAidyn’s procedure would make a life-changing difference. 

“DeAidyn had been in a medically induced coma since March,” said Dr. Vessell. “With his degree of seizure burden, there was a risk of permanent brain damage, so the procedure was truly necessary.”

Preparing for surgery, doctors first woke DeAidyn from his coma — to see if he could tolerate the surgery, they needed to assess what damage had already been done by the seizures. Once awake, he continued to experience a high number of seizures, but he was thankfully approved for the surgery.     

After the surgery, DeAidyn’s seizures went from hundreds a day to no more than three a day at most — a remarkable outcome. 

“Just to see my son up, his eyes open and moving even just a little, it’s a miracle,” Collins told the Austin American Statesman. 

Of course, DeAidyn is still facing a long road to recovery — his time in intensive care, the surgeries and the length of time during which he remained in a medically induced coma all meant that DeAidyn had to build his muscles again and work on strengthening his lungs. But DeAidyn is resilient.

“He has been a deeply inspirational patient for our hospital,” said Dr. Vessell. “On the day he went home, we held a red carpet celebration for him. He’s a great example of courage and persistent hope.”

The family now drives to Austin twice a week for physical and occupational therapy at Texas Children’s. “I can’t believe how far he’s come,” DeVonte told the Austin American Statement. “From where we were at, we’re in a good position right now…He’s doing awesome…I’m loving it, man.” 

Learn more about Texas Children’s North Austin Campus.