Treating ‘untreatable’ epilepsy in children

Uncontrolled convulsions, tremors, jerky movements, staring, stiffening of the body and loss of consciousness are all signs of epilepsy in children.

In the U.S., 3.4 million people have epilepsy.

Timely diagnosis and treatment are key for these kids to develop normally.

“He had a seizure that was more just, kind of a twitch,” said Sarah Patty, mother of Johnny.

Johnny has epilepsy. Johnny’s stiff and jerking movements started when he was 2 and got increasingly worse.

“He had seizures that were starting from only one part of his brain,” said Dr. Fernando Galan, Pediatric Epileptologist at Nemours Children’s Health.

Medications didn’t work.

“If you fail more than two anti-seizure medication trials at appropriate doses, then you’re classified as treatment resistant,” Galan said.

But time matters.

“We do know that outcomes are better the earlier you do surgery,” Galan said.

Today, non-pharmaceutical options include ketogenic diets that limit sugar and carbs and have been proven for some to ease, even cure, seizures. Vagus nerve stimulation controls seizures by sending small pulses of energy that regulate the brain’s excitability. Laser interstitial thermal therapy uses a tiny laser fiber to deliver heat directly into the epileptic lesion.

“He underwent a surgery that’s called a Right Temporal Lobectomy, so we removed his temporal lobe, and we were able to stop his seizures,” Galan said.

It’s a recovery you can see. Three days after surgery, Johnny’s moving slowly. Six days later, and he’s almost back to normal. One month later, Sarah had her little rambunctious boy back, ready to start first grade with nothing holding him back.

“I never would’ve guessed that our son would be this active,” Sarah said.

Also, Johnny’s speech improved after surgery.

Doctors believe the area of the brain causing the epilepsy may have also impacted his speech.

Galan says, depending on the type of epileptic surgery, up to 70% of children will remain seizure-free long-term, but there’s always a risk the seizures can return. That’s usually because the extent of where the seizures were coming from is larger than what was expected.