What Is Intractable Epilepsy?
Intractable epilepsy is when seizures can't be completely controlled by medicines. (Intractable means "not easily managed or relieved.") It's also called refractory, uncontrolled, or drug-resistant epilepsy.
What Happens in Intractable Epilepsy?
Intractable (in-TRAK-tuh-bul) epilepsy happens if the medicine prescribed:
- stops working
- doesn’t completely control seizures
- causes severe side effects that make it hard for someone to keep taking it
About 1 in 3 of people with epilepsy have intractable epilepsy. They're common in kids who have infantile spasms, Lennox-Gastaut syndrome, or genetic mutations associated with epilepsy.
Other causes include tumors and scarring from brain injury, or lack of oxygen.
How Is Intractable Epilepsy Diagnosed?
Intractable epilepsy usually is diagnosed after two carefully chosen, safe medicines don't completely control the seizures. The chances of a third or 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, the best way to reduce or stop seizures might be epilepsy surgery. Many children with intractable epilepsy are good candidates for this surgery, which can lead to good seizure control and a better quality of life.
Other treatment options include dietary therapies, such as a special diet, like the high-fat, low-carbohydrate ketogenic diet. The Modified Atkins Diet is a less restrictive version of the ketogenic diet that may help some people.
Sometimes doctors recommend neurostimulation therapy, such as vagus nerve stimulator (VNS) therapy. This uses an implanted device (stimulator) in the left side of the chest to send mild pulses of electrical energy to the brain through the vagus nerve.
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.
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: