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.
No matter which Western treatments they try—from heavy-duty anti-seizure drugs such as Depakote and Keppra, to intravenous immunoglobulin, steroids, cannabidiol, a ketogenic diet, and vagus nerve stimulator implants—nothing, and I mean nothing, works. Anti-seizure medications (ASMs) either don’t work, wear off, or even worsen seizures—yet we’re still told they need to take them….