In the seven years since Calvin was diagnosed with epilepsy I have corresponded with four parents whose children died in their teens from seizures, two who drowned as a result. Regrettably, some of those parents, it seems, did not understand the severity, risk and mortality rate of epilepsy, likely because their neurologist didn't broach the subject. Then, in a blink, their child is gone. One parent recently wrote to me anonymously:
My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.
My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.
It is simply inexcusable for neurologists to avoid confronting the topics of SUDEP: Sudden Unexplained Death in Epilepsy, the fatal outcome of some prolonged seizures and the risks of fatal bodily injuries and drowning due to seizures. The failure to do so is partly to blame for society's ignorance of the devastating effects of this disorder and, thus, its lackluster funding for research.
The mortality rate of people with epilepsy is three times greater than that of the general population and the risk of accidental death is twenty-four times greater. If more parents knew this perhaps some of these deaths could be avoided. Grow some spines, neurologists, and buck up to the tough talk. You know who you are. What if he or she were your child? How would you feel?
Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com
Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com
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| One of many who have died, Kevin Andrew Mateczun, December 6, 1984 - August 8, 2001 |
I'm so sorry for any parents who lose a child. That said, I feel obligated to play devil's advocate regarding the notion of "inexcusable" behavior you reference. My impression is that neurologists are between a rock and a hard place. They can treat as many children as possible or advocate publicly for them. Both take time. Should they take time out of their clinical practice to advocate, causing longer waits for patients?
ReplyDeleteMore research needs done, too. Who is going to do that? Those same neurologists? A cartoon image comes to mind - a neurologist being stretched in different directions by advocacy, patient care and research. Maybe we just need more neurologists!
you miss my point. neurologist should simply tell their patients and their pediatric patients' parents that you can die from a seizure, and explain the many ways how, particularly SUDEP, which is often, if not usually, an avoided topic.
ReplyDeleteAnonymous, I don't believe Christy is admonishing neurologists for anything here other than being frank and transparent with their patients in regard to SUDEP. The risk of SUDEP has only recently been acknowledged in the epilepsy community due to family advocacy (in Great Britain). While there is certainly a shortage of epileptologists, those that are currently practicing need to provide this information and begin the dialogue.
ReplyDeleteAnonymous, Christy is not talking about doctors doing advocacy work *instead of* practicing medicine. She is only suggesting that doctors do not obscure the medical realities of epilepsy. This is such a morally difficult issue. While I was doing epilepsy research this summer, this was often a topic of conversation. As you mention, Elizabeth, the UK has now required that doctors tell parents about the risk of SUDEP upon a child's diagnosis. One of the professionals I met felt as Christy does, that it is essential to disclose the whole truth and nothing but the truth to families. Another of the doctors I worked for, though, felt that the measure in the UK was too broad. Children with some types of epilepsy are much more likely to die of SUDEP and telling all parents could just serve to create unnecessary anxiety and paralise them when trying to live in the present with their child. I don't know what the right answer is. It's too bad that it even has to be a question.
ReplyDeleteIn addition to having a nearly eighteen year daughter with refractory epilepsy, I've worked for many years in the epilepsy world as a parent "expert" on national collaboratives and improvement projects. I can honestly say that it's only now, in the last few years, that the subject of SUDEP even comes up in the conferences and collaborative meetings that I attend, and that's because families have pushed for it. We also push for communication, education, etc. -- with obvious cultural sensitivity, etc. Sometimes I think about how differently people are treated when breast cancer is diagnosed or even some pediatric cancers -- and how many years it took for the medical world to speak frankly to patients and then how many years it took the culture to even say the word. I think we face the same thing in epilepsy, and the longer we take to acknowledge the very real risk, the longer it will take to rectify it --
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