Intractable Epilepsy
What Is Intractable Epilepsy?
Intractable epilepsy is when seizures can't be controlled by medicines. (Intractable means "not easily managed or relieved.") It's also called refractory, uncontrolled, or drug-resistant epileptic seizures.
About 1 in 3 of people with epilepsy have intractable seizures.
What Happens in Intractable Epilepsy?
Intractable epilepsy happens when the medicine prescribed for a seizure type doesn't work, stops working, or causes severe side effects that make it difficult to use.
Who Gets Intractable Epilepsy?
Intractable epilepsy is common in kids who have infantile spasms, Lennox-Gastaut syndrome, or, less often, juvenile myoclonic epilepsy (JME).
Seizures caused by tumors, scarring from brain injury, or lack of oxygen also can be intractable.
How Is Intractable Epilepsy Diagnosed?
Intractable epilepsy usually is diagnosed after three carefully chosen, safe medicines don't completely control the seizures. The chances of a fourth medicine working are very low, so doctors will diagnose intractability at this point.
How Is Intractable Epilepsy Treated?
When medicines do not prevent a child's seizures, doctors may recommend a special diet, like the high-fat, low-carbohydrate ketogenic diet.
Sometimes they recommend vagal nerve stimulation (VNS). In VNS, an implanted device (a stimulator) sends mild pulses of electrical energy to the brain through the vagus nerve.
Epilepsy surgery might be an option for about half of children with intractable epilepsy. Most of them can benefit significantly from surgery.
How Can I Help My Child?
Talk to your doctor to see what treatments are available for your child. Make sure your child takes medicines as prescribed and avoids known seizure triggers, such as lack of sleep, antihistamine use, or excessive stress.
Always tell the doctor if you think a medicine isn't working or you don't notice any improvement. This helps the doctor give your child the best possible care.
It's important to keep your child safe during a seizure. So make sure that other adults and caregivers (family members, babysitters, teachers, coaches, etc.) know what to do.