Drug-Resistant Epilepsy

Most children become seizure-free with medicine. But in about one in three, seizures aren't controlled well enough by medicine. This chapter offers a road map for the families in that group. The most important message is this: drug-resistant epilepsy doesn't mean hopelessness; it simply means different paths need to be tried.

What Is Drug-Resistant Epilepsy?

By the international definition, when seizures continue despite two different anti-seizure medicines that were properly chosen and used at adequate doses, this is called drug-resistant (or refractory) epilepsy. The importance of this diagnosis is that from this point on, trying a third or fourth medicine one after another has a steadily lower chance of achieving seizure freedom. That's why, at this stage, being referred to an epilepsy center to consider non-medication options comes onto the table.

First: Is It Truly Resistant?

When seizures aren't controlled, your doctor reviews a few possibilities before moving to non-medication treatments. Because sometimes the problem isn't “true resistance”:

• Is the diagnosis correct? Are the events really epileptic seizures, or another condition that mimics epilepsy? (Video-EEG is valuable here.)
• Is the medicine right? Was a medicine suited to the seizure type chosen? The wrong medicine can make some seizures worse.
• Is the medicine taken regularly? Missed doses are the most commonly overlooked cause of “false resistance.”
• Are triggers being managed? Triggers such as lack of sleep may be keeping seizures going.

Options in Drug-Resistant Epilepsy

If there is true drug resistance, today we have many options, and we'll cover each one in the chapters that follow:

• The ketogenic diet and its variations (Chapter 23).
• Epilepsy surgery — in selected patients, it can offer a lasting solution (Chapter 24).
• Vagus nerve stimulation (VNS) and other neuromodulation methods (Chapter 25).
• New medicines and targeted treatments such as cannabidiol (Chapter 26).
• The option, for suitable patients, of taking part in clinical research.

Being referred to an epilepsy center

Your child being referred to a specialized epilepsy center doesn't mean the situation is “getting worse.” On the contrary, it's the right step to put all the options on the table.

At these centers, a team made up of a pediatric neurologist, an epilepsy surgeon, a neuropsychologist, a dietitian, and a radiologist works together to find the best path for your child. See this referral as a door to hope.

Holding On to Hope in Drug-Resistant Epilepsy

When seizures can't be controlled with medicine, it's one of the most exhausting experiences for families. But this is not the end of the road; it's the beginning of a different one. Today we have far more options than we did twenty or thirty years ago: new medicines, the ketogenic diet, advanced surgical techniques, nerve stimulation, and targeted treatments. What's more, medicine is advancing quickly in this field, and new solutions may emerge tomorrow for some situations that look hopeless today.

In drug-resistant epilepsy, the most important step is to have the whole picture reviewed again, as a whole, at an experienced epilepsy center. This review looks again at whether the diagnosis is correct, at the choice of medicine, and at whether non-medication options are suitable. Sometimes this comprehensive look reveals a solution that hadn't been noticed before. So if seizures aren't being controlled, see a referral to an epilepsy center not as a “last resort” but as a proactive step taken at the right time.

Using More Than One Medicine (Polytherapy)

In some children, more than one medicine needs to be used together to control seizures. In this case, your doctor tries to choose medicines that complement each other (working through different mechanisms) and to keep side effects to a minimum. Using several medicines requires closer monitoring, because medicines can change each other's effect and blood levels. For this reason, if your child is taking more than one medicine, a neurologist should always be consulted before any new medicine is started (even for an illness unrelated to epilepsy).