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.
What Happens in Intractable Epilepsy?
Intractable (in-TRAK-tuh-bul) epilepsy happens when the medicine prescribed for a seizure type doesn't work, stops working, or causes severe side effects that make it hard to use.
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 vagus nerve stimulator (VNS) therapy. An implanted device (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 Parents Help?
Talk to your doctor to see which 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 serious 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. Make sure that other adults and caregivers (family members, babysitters, teachers, coaches, etc.) know what to do if one happens.
What Else Should I Know?
If your child has epilepsy, reassure them that they’re not alone. Your doctor and the care team can answer questions and offer support. They also might be able to recommend a local support group. Online organizations can help too, such as:
- Infantile Spasms
- Lennox-Gastaut Syndrome
- Juvenile Myoclonic Epilepsy
- First Aid: Seizures
- Epilepsy Surgery
- Epilepsy Factsheet (for Schools)