SUDEP- Something You Probably Have Never Heard Of

What is SUDEP? One of my worst nightmares. We not only have to worry about Owen's seizures possibly killing him, we also have Sudden Unexpected Death in Epilepsy Syndrome. SUDEP is when an otherwise healthy person with epilepsy dies unexpectedly, not as a result of an injury or status seizure (seizures that don't stop, the kind Owen has). The chances of someone with epilepsy dying of SUDEP are about 1 in 1000. The numbers go up to 1 in 150 for the type of epilepsy Owen has though.

 Owen has stopped breathing during seizures several times. Once for 5 minutes while I did rescue breathing waiting for the ambulance to arrive. He has needed oxygen during and after seizures before due to low pulse ox. During the "bad" 2 hour and 40 min. seizure he had to be intubated to get enough oxygen. BUT Owen has also stopped breathing after seizures before. Once right after the seizure ended just before the ambulance arrived and the other two times within an hour after the seizure ended. The last seizure he had (on Duncan's birthday) wasn't what we considered a bad seizure. It was less than 15 minutes(rescue med given at 4 min) and he didn't need any oxygen. The paramedics checked him out everything looked fine so they left. We don't bother to transport anymore unless the seizure doesn't end by the time paramedics arrive or he needs supplemental oxygen. Half an hour later, he stopped breathing. All it took was a change in position to get him breathing again, but if we hadn't been watching him closely the outcome could have been much worse.

  Why am I telling you this? Because I had never heard of SUDEP before. I think everyone has heard of SIDS, but very few people have heard of SUDEP. As a mom of a child with intractable (uncontrolled ) epilepsy, I have NEVER been told about SUDEP by a medical professional. When Rod and I brought it up to our neurology team they kind of blew us off about it. The current mindset seems to be that there isn't anything to be done about it, so why worry parents. I don't buy into that type of thinking. First, I think it is important to be informed even if I can't do anything about it. Second, the one thing that seems to be able to prevent SUDEP is close supervision especially in the first several hours after a seizure. In the FAQs here it says that close supervision may not be desirable, but if it can save a life it might be worth giving up a little privacy or autonomy. if someone you know has a seizure please don't leave them alone for an hour or two afterward if at all possible.