This year, I want to talk about Sudden Unexplained Death in Epilepsy, also known by the acronym SUDEP. SUDEP is “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death.” In other words, an "unexplained death in someone who has Epilepsy."
I mention a lot on this blog about how we've been told that Jenelle has a short life expectancy, but I don't think I talk much about why that is... for obvious reasons I hope. Death is not a topic that we like to discuss, let alone the possible death of one's own child. This week, I have been struggling a lot with the recent death of a friend, with Jenelle's mortality and my own. I felt this topic was very fitting this year.
My friend Enid was diagnosed with breast cancer six months after my initial diagnosis with AML four years ago. She fought hard and we mutually inspired each other in our fight. She went into remission, but a year later her cancer returned. She died last Saturday leaving a husband, and three young children; and here I am poised to celebrate my 4th year in remission in December. All the questions I have, and all the "what ifs" and that could be me - Survivor's guilt is a bitch.
The night I learned of Enid's passing, I had a rough time sleeping. All I could think about was losing Jenelle. I mention it many times, Jenelle has doubled her life expectancy. She is, however, very medically fragile - and though I understand all of the consequences, and "what ifs", I can't imagine how I'm going to function when she's gone. I talked to Brett about it, and he made me laugh of course,
"Well, you are finally catching up! I embraced that thought a long time ago and realized there is nothing I can do about it. She's going to go when it's her time, it's going to be quick, and all I can do is hug her each day, tell her I love her, and enjoy her while she's here."I see it that way too; I know every day with Jenelle is a gift. However, as she gets older, we are entering unknown territory with Jenelle, and when friends you hope will survive against all odds die, you just feel a little less secure in your optimism.
This is what is feels like to know you have a medically fragile child. To realize that she will have a "sudden, unexplained death because of her epilepsy." Patients like Jenelle with Lennox Gastaut have a high rate of morbidity due to "accidents"; in that I'm reminded of her accident falling into our neighbor's pool more than a year ago. Accidental death can occur during a seizure if the patient has a fall when seizing, or an accident driving a car when a seizure occurs (assuming the patient is driving), or drowning due to swimming when a seizure occurs, etc. One of the biggest concerns for Jenelle is Status Epilepticus - or constant seizure state, which can in rare cases can end in death. It seems like a lot of this can be prevented with common sense really, but like we realized after Jenelle's fall into our neighbors pool, anything can happen.
The strongest weapon we have against death in epilepsy, is advocacy and education. Educate yourself on what to do during a seizure, and educate yourself on what to look for. Know the recommended first aid response. Advocacy is key in helping others know what to do and what to expect. When you know what to expect and what to do, it isn't as scary as it sounds.
Since Jenelle's initial LGS diagnosis in 2005, the Internet seems to have blossomed with new information. Here are some wonderful and informative new links that I found in researching this post, and that I will add to our side bar of links.
About LGS (this site sponsored by the drug Onfi, which Jenelle started taking in July)
Epilepsy dot com
Remember to wear your Purple this month and remember to talk about Epilepsy Awareness!