Washington University's seizure study gives family hope - KMOV.com

Washington University's seizure study gives family hope

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Stella Craig (Credit: Family) Stella Craig (Credit: Family)
ST. LOUIS, Mo. (KMOV.com) -

Seizures are one of the most common neurologically-based emergencies for children and now, Washington University doctors at St. Louis Children's Hospital are trying to figure out the best way to stop them.

The Craig family knows too well how terrifying seizures can be.

"She started having seizures at 6 weeks old and we figured out pretty quickly that because of the nature of her seizures, they were going to be a very aggressive type of epilepsy," said Kacie Craig about her daughter Stella.

When Stella was born, she was the perfect piece to complete her Springfield, Missouri family's puzzle, but just months into this world, her family found themselves rushing her to the emergency room and eventually to St. Louis Children's Hospital to work with some of the best neurologists.

"It didn't stop. When went home and she kept having seizure after seizure. Most of them were over five minutes long," said Craig. "We found out she has a genetic disorder called SCN8A. There are only about 150 cases known worldwide and we are represented in 23 countries."

"Seizures that are longer than five minutes can cause brain damage and even death, especially if they get longer than 30 minutes. So it's a really important neurological emergency," said Dr. Liu Lin Thio, Washington University pediatric neurologist at St. Louis Children's Hospital.

Stella's diagnosis and the seizures she continues to have already changed the course of her life.

"Low tone. Developmental delays. She has cortical vision impairment. She also has hearing loss. Her life is much different than what we had originally expected," said Craig. "But you find joy in the small things that you would normally take for granted. She brings us joy every day. Every smile, every giggle, every laugh, we treasure that normally we probably would just accept because it's normal."

The Craig family and doctors like Dr. Thio refuse to settle.

"The idea here is to try to find out what the best medication is to stop these seizures because we actually don't know that despite this condition being known about for thousands of years," said Dr. Thio.

To get that answer, these doctors are taking part in a national study funded by National Institutes of Health.

Now, when a child age 2-17 comes into the emergency room at St. Louis Children's Hospital having a prolonged seizure, they will be entered into the study if they meet certain criteria. They will be given one of three common drugs: Fosphenytoin, also called Cerebyx; levetiracetam, also called Keppra; and valproic acid, also called Depakote. These are treatments traditionally given in the case of a prolonged seizure that does not respond to initial treatment but which one usually depends on the doctor's preference. In the case of the study, neither the patient nor the physicians will know which one the patient will receive. Then, the data, including how the child responded to which medication, will be recorded.

"These studies are very hard to do because we are dealing with people who are in an emergency situation," said Dr. Thio.

The study is unique because it utilizes the exception from informed consent rule, meaning parents do not have to give initial approval to be part of the study. But, once things settle down and the child is stable, parents will be notified. At that time, they can choose to withdraw their child from the study if they'd like.

"I hope that we do find out which of the three medications is the best medication and that will have an impact on how we treat status epileptics, not only in children but also in adults," said Dr. Thio.

Hearing about research like this gives the Craig family hope that doctors are improving treatment for patients like Stella.

"There might be a seizure she doesn’t come out of and she has a higher chance of that because of her genetic mutation. Every seizure is a life or death situation," said Craig.

It may be years before researchers know the results. In the meantime, the Craig family is cherishing every moment with Stella.

"I just want her to be happy. I want her to have as many opportunities as possible. We treasure her and just hope to have as much time with her as possible," said Craig. "These kids are so special. They are never a burden. They are little miracles that allow you to see joy in things that would otherwise go unnoticed."

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