I was at a seminar at our local children’s hospital, to teach parents about epilepsy. I asked the neurologist, “It seems there is a lot of information about seizures and all that…but I never hear anything about SUDEP and that is what worries me most. Is there any new research on SUDEP? Is there anything we can do to try to prevent it? How come no one ever talks about SUDEP?”
His response (and in a very condescending tone, I might add, and I’m not the only one who heard the tone): “Well, let me ask you this, you learn that your baby has seizures…is the first thing you want to hear that they might die in their sleep?”
Me: “Well, no, it doesn’t have to be the first thing….but it should be discussed.”
And yes, for the record, it has been my experience at 3 different hospitals with more neurologists than I can count….no one EVER brings up SUDEP.
Parents need to know about SUDEP.
He began to talk more. But as he was talking, another mom near me leaned over and asked, “What is SUDEP?”
So I told her. And, it turns out, her son is also at high risk for SUDEP, just like mine.
A few weeks ago, I watched an online webinar about epilepsy. We were invited to submit questions to the neurosurgeon doing the webinar, live and in real time. Near the end, she said, “Well, if there are no more questions….”
I submitted a question. It was about SUDEP. Her assistant handed it to her. She got a funny look on her face for a moment. Then, did not answer it. Moved on to something else.
This has to change.
The message from the medical community is loud and clear…we don’t like talking about SUDEP.
I am NOT a neurologist, nor do I play one on the internet. However, since my son has Lennox-Gastaut and severe sleep apnea, he already is at a much higher risk for SUDEP. Additionally, since he also has Dup15Q, he is at an ever higher risk. Because for some unknown reason, SUDEP seems to affect the dup15q population at higher rates than the general epilepsy population. Because of this, I have read absolutely everything I can on SUDEP, including painfully combing through academic research and deciphering every word and phrase.
Sleepless Nights for Parents
Which is exactly what made me want to do this post for SUDEP Action Day–the hashtag. I received the materials, and one of the hashtags is #DareToSaySUDEP. If we can’t talk to neurologists about this, who can we talk to?
What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.
Now you’re thinking, “oh right..that’s why no one wants to talk about it.”
No, they don’t. It’s an unpleasant topic.
What happens in a SUDEP death?
The person with epilepsy is often found dead in bed and doesn’t appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
This is why I don’t sleep at night. Do you blame me? But some of the newer research is pointing to consistencies with SIDS and SUDEP. That is, no excessive bedding, trying to get the child to sleep on their back and so on. Mind you, none of this is a guarantee. None.
Can SUDEP be prevented?
Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. (this is a polite way of saying no, you cannot prevent it)
For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices including the support of an epilepsy specialist. And for people with the most severe types of difficult to control epilepsy, there are steps an individual can take to lower one’s risk, including participating in research to find new, more effective therapies.
What you can do about SUDEP.
It means if your child has seizures, you need to be aware of SUDEP.
You should read about it, learn about it, talk to your neurologist.
Consider a video monitor for your child’s bedroom.
Talk to your doctor about what you can do.
Please note: SUDEP Action Day is typically held in October. This post was originally published near a SUDEP Action Day but was recently edited and republished.