Hope for Intractable Epilepsy Doesn’t Come From Drugs

For 30 percent of epileptics, drugs don't work so other approaches are essential

Beth Giuffre's son Luke, 14 years old at a gem mine. Courtesy of Beth Giuffre

I recently attended an online symposium for my son’s rare, super-refractory epilepsy syndrome: febrile infection-related epilepsy syndrome. FIRES is considered one of the most catastrophic seizure conditions, typically occurring “out of the blue” in healthy children from 4 to 6 years old. New-onset refractory status epilepticus (NORSE)  is the same syndrome but in young adults.

It’s estimated that approximately 20 percent of drug-resistant epilepsy cases are FIRES/NORSE. Most kids with FIRES see no improvement in seizure control once they’re released from the hospital and enter the chronic, lifelong stage of epilepsy.