SUDEP: Something Worth Knowing, But Not Worth Panicking Over

This chapter covers a sensitive but important topic: SUDEP. We included it because families have the right to reach accurate, balanced information from a trustworthy source, rather than from frightening and incomplete information online. Our aim is not to scare you but to inform you and to show you ways to reduce the risk.

What Is SUDEP?

SUDEP (sudden unexpected death in epilepsy) is when a person with epilepsy dies suddenly and unexpectedly, without any other explainable cause. It is rare, and the likelihood of it happening is even lower in children than in adults. It's important to stress this from the very start: SUDEP is rare, and the vast majority of children with epilepsy never experience it.

Why Are We Talking About This?

For a long time this topic was kept from families, out of a wish to "not frighten them unnecessarily." But today's approach is to inform families. That's because there are concrete ways to reduce the risk of SUDEP, and only an informed family can put those ways into practice. Here too, information is a tool for protection, not for fear.

Factors That Increase the Risk

Research shows that certain factors increase the risk of SUDEP. The most important is uncontrolled tonic-clonic (stiffening-and-jerking) seizures, especially those that happen during sleep. The more frequent and uncontrolled the seizures, the higher the risk. This information is actually encouraging, because it points us directly to a way to protect against it: getting the seizures under control.

Ways to Reduce the Risk

• Most important: Get the seizures under the best possible control. Good seizure control is the strongest way to reduce the risk of SUDEP. And that comes from taking medication regularly.
• Medication adherence. Taking medications regularly, without ever skipping, is vitally important. Pay special attention to this with teenagers.
• A regular sleep routine and avoiding triggers. Managing triggers such as lack of sleep reduces seizures.
• Nighttime supervision. For children whose seizures (especially at night) are not under control, you can talk with your doctor about the benefits of nighttime supervision and seizure-monitoring devices.
• Regular follow-up. If the seizures cannot be brought under control, don't delay a referral to an epilepsy center to review the treatment.

A balanced view

SUDEP is a real but rare risk. Turn this information into a source of motivation for good seizure control and medication adherence, not into a constant source of fear.

Talk openly with your doctor about any worries on this topic. Your doctor is best placed to assess what the risk is specifically for your child and what precautions can be taken. If this topic is emotionally difficult, don't carry it alone; ask for support from your doctor and, if needed, a mental health professional.