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Pediatric epilepsy is focus of Oklahoma City family lecture series

by Jaclyn Cosgrove Published: November 28, 2012

Pediatric epilepsy isn't something you see awareness ribbons for.

There isn't something like a pink rubber bracelet, which immediately makes you think of breast cancer.

But after losing their infant son to the disease, Lee Anne and Renzi Stone want more Oklahomans to understand pediatric epilepsy.

And they want parents and caregivers of children with epilepsy to know they're not alone.

The Isaiah Stone Pediatric Epilepsy Lecture Series is one of many things that the Stone family has done to remember their son. The series brings in experts on the disease to educate medical students, parents and caregivers. Isaiah Stone was only 11 months old when he died May 17, 2010, from complications related to pediatric epilepsy.

Epilepsy is a chronic neurological condition characterized by recurrent seizures, according to the Centers for Disease Control and Prevention.

It's a disease with a range of hit-or-miss mediciness. It's expensive to treat and not entirely understood by doctors and scientists.

There are still many mysteries in neurology and in how the brain works, said Dr. Angus Wilfong, the medical director of the comprehensive epilepsy program at Texas Children's Hospital.

“It's really the final frontier in medicine,” Wilfong said. “We know how the heart works. We know how your kidneys work, but we're still searching for ... how the brain works, and diseases that impact the brain, like seizures and epilepsy, we're just beginning to scratch the surface how these diseases are occurring.”

Isaiah Stone was born June 15, 2009. He had his first seizure, lasting 22 minutes, when he was four months old in October 2009.

The family quickly made an appointment with a child neurologist, but they would have to wait weeks to get any answers. Isaiah's appointment wasn't until Jan. 5, 2010.

“For a parent who's just witnessed their child have a seizure, 24 hours, much less 24 days, or in our case 55 days, until an appointment is unacceptable,” Renzi Stone said. “We let OU know that it was unacceptable, and they agreed, and they've made huge strides to addressing that problem.”

At the time of Isaiah's first seizure, there weren't as many child neurologists in Oklahoma. Nationwide, there is a shortage of child neurologists, especially doctors who understand pediatric epilepsy.

Dr. Yu-Tze Ng, the director of epilepsy for OU Children's Physicians, said the facility now has four child neurologists and soon will have a pediatric neurosurgeon.

“The average (wait) time in this county is three to six months, really, up to year,” Ng said. “I'm pleased to say that we're down to less than a month here at Children's because of having successfully recruited child neurologists.”

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by Jaclyn Cosgrove
Medical and Health Reporter
Jaclyn Cosgrove writes about health, public policy and medicine in Oklahoma, among other topics. She is an Oklahoma State University graduate. Jaclyn grew up in the southeast region of the state and enjoys writing about rural Oklahoma. She is...
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