Patty McGoldrick: One of the things that we don't often talk about to persons with epilepsy is the risk of death from a seizure. So there's something called SUDEP which is sudden unexpected death in epilepsy. It's a real risk. It occurs more often in males, more often young adults like 20's to 40's with poorly controlled seizures.
Steve Wold: These guys are usually on multiple medications. And it is no predicting factor as to whether it's going to happen at night or not, or when it could happen. These aren't seizures that are caused by some accident. These are just patients who are basically found dead in bed.
Patty: Right. It often occurs at night. They're often found in a prone position. And there's some controversy about whether there's some underlying channelopathy that also affects the heart at the time that the seizure occurs and that's what causes death. But it's a horrible, devastating thing to happen to anyone. It also happens in children. That's not to say it only happens in young adult males.
Steve: But we don't want people to become overly worried about it. We want them to become educated about it. We usually give that this is a relative risk. You, as a person who doesn't have epilepsy, the risk of you walking out of a building, getting hit by a taxi and killed by a taxi, and we're in New York City, that could happen. So there is always a risk when you walk out of a building of getting hit by a taxi and being killed. The incidence of you dying from SUDEP, sudden unexpected death in epilepsy, is probably about the same. So, it's there. We don't want you over thinking about it. We want you as best controlled as possible with the seizures and good medication. So, you need to keep that in the back of your mind.
Patty: People also worry about is that the person with epilepsy will be having seizures at night and no one will know about it. So we don't advocate having the child sleep in bed with you to eliminate this risk. We do advocate separating, having a monitor in the room. It's not always possible. And most of the people with SUDEP are adults, so you're not going to be sleeping in bed with them unless you're their partner.
Steve: If you're concerned about SUDEP go and talk to your practitioners. Ask them about it. Ask them if you are a patient who's at risk or a family member is at risk and what things you can do to help decrease that risk.