YOUR HEALTH: Saving Johnny: Treating untreatable epilepsy

Early diagnosis and treatment are key for kids with epilepsy to develop normally.
Published: Oct. 11, 2023 at 8:37 AM CDT
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JACKSONVILLE, Fla. (Ivanhoe Newswire) - Uncontrolled convulsions, tremors, jerky movements, staring, stiffening of bodies, and loss of consciousness — these are all signs of epilepsy in children. In the U.S., 3.4 million people have epilepsy. Early diagnosis and treatment are key for these kids to develop normally.

Sarah Patty can’t believe it was just over a year ago that her little guy, Johnny, had brain surgery. Johnny has epilepsy; his stiff and jerking movements started when he was two and got increasingly worse.

“He had seizures that were starting from only one part of his brain,” said Johnny’s doctor, Fernando Galan, a pediatric epileptologist at Nemours Children’s Hospital in Jacksonville, Fla.

Unfortunately, medications didn’t work.

“If you fail more than two anti-seizure medication trials at appropriate doses, then you’re classified as treatment-resistant,” explained Dr. Galan. “We do know that outcomes are better the earlier you do surgery.”

Today, non-pharmaceutical options include ketogenic diets that limit sugar and carbs and have been proven for some to ease or 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.

The final option for Johnny included surgery.

“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,” added Dr. Galan.

Three days after surgery, Johnny was moving slowly. Six days later, he was almost back to normal, and one month later, Sarah had her little rambunctious boy back.

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

Now, Johnny is ready to start first grade with nothing holding him back.

Also, Johnny’s speech improved after surgery. Doctors believe the area of the brain causing the epilepsy may have also been impacting his speech.

Dr. Galan says, depending on the type of epileptic surgery, up to 70 percent 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.

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