Epilepsie et SUDEPoctobre 4, 2019
Oof. We’ve been slowly trying different medications for my daughter’s seizures, but so far all of them have either not worked to fully control the seizures (though they do partially control them) or they’ve had
that have turned our lives upside-down.
There appears to be a direct correlation between SUDEP and those who sleep alone in one’s own room. In fact, such a child should not sleep in his or her own room
And she started sleeping in her own room about a year ago, which has led to much better sleep for both of us… 🙁
We’ve been wrestling with many of the same questions as you, clawsoon, after my daughter had her first seizure about a year ago and was diagnosed with Benign Rolandic Epilepsy. It feels like after she adjusted to trileptal and upped the dosage, her possible auras and possible tonic overnight seizures seem to be happening less. Her last EEG still showed epileptic-activity. But it’s been a confusing journey when in someways so little is known for sure.
As someone w/ epilepsy, under control nevertheless, this is news to me.
Thank you for sharing. I understand why medical professionals might not want to share information about this risk with children with epilepsy, but to not even share it with parents (let alone adults with epilepsy) seems like a very outdated attitude. Share the information and help the patient understand what the low chance of risk means.
My cousin/best friend died this way in 2014. After her epilepsy was diagnosed, she would lie awake at night worrying that she would go to sleep and never wake up. Which is exactly what happened. It’s fucking terrifying that there was nothing anyone could have done.
It is kind to those who pass, but not kind to those who come in with a wake up coffee an hour after arising, per sweet agreement.That is how my friend found that the love of his life, had died. I also had an old friend die from this. I just don’t have that many IRL social contacts, so this is a relatively high percentage, and I know of this, though epilepsy is not in my family.
I also had a close friend die of epilepsy in his 20s. Had no idea it was relatively common.
This hits close to home for me. My son has epilepsy and his seizures were mostly at night. His first classic tonic clonic seizure happened while we were on safari in Tanzania. We thought his seizures were rare, turns out he was having them more often than we thought. They were at night and hence unobserved (We discovered this when traveling with him and sleeping in the same room).
> There appears to be a direct correlation between SUDEP and those who sleep alone in one’s own room. In fact, such a child should not sleep in his or her own room.
Easy to say but really really hard on the family. Especially with teens. The compromise is to use a nighttime seizure monitor. There are several on the market including the one I created and have been selling for six years. Memail me for details. Monitoring isn’t a guarantee of safety but is better than not monitoring at all.
We work closely with the
to help get the word out about SUDEP.
Bottom line, if you or your child has epilepsy monitor closely at night at least for a while.
BTW, my son had a temporal lobe resection and has been seizure free for over five years. And… getting married next month. 🙂
I have a niece and nephew with epilepsy. I don’t know if my sister knows this information and, quite frankly, I have no idea how to broach the subject.
My best friend in middle school died from this in high school. I never even knew he had epilepsy until I got the phone call that he’d died.
The firstborn child of a friend from high school has Dravet syndrome. Through her Facebook (where I’ve watched her post about the journey from that first hospital trip eight years ago), I have learned a
about SUDEP and therapy dogs and the twists and awful turns of their diagnosis. More funding for science here, please.
To parents, I am not your child’s doctor, but I do want to offer the comfort that I am an adult who had seizures as a child and grew out of them and was able to stop taking medication. I still had a few in adulthood, about once year or so, which they said was triggered by fainting (as I have another condition that predisposes me to syncope) but I’m not so sure because I always got pre-seizure symptoms before fainting. Either way, I haven’t had any in over three years now. I can’t guarantee it’ll happen for your child, but relief can come. I hope it comes to you and your children.
Brook Horse, the woman who my friend loved had childhood epilepsy. She didn’t have siezures as an adult, this is the only diagnosis they came up with after autopsy. My friend who was married to her didn’t even know about it, until the autopsy came up without cause.
I don’t know you or your sister, but I’d say finding the right time, maybe even just a phone call (no text or email) out of the blue, to say « listen I heard some kind of disturbing stuff, and I’m now concerned and want to tell you but maybe you don’t want to know » paraphrased of course to go with how you talk to your sister….
Like, this is actual medical information. This isn’t a rumor or a new movie coming out that you know SPOILERS or whatever. Arming your sister with this information may lead to better outcomes for your n-units than not telling her.
Again, I don’t know your or your sister. So you are the best judge about any of this.
Big Al 8000, just want to say I’m struggling with the same question – a friend’s child was just diagnosed with an unusual seizure disorder earlier this year. Their family is dealing with so much right now – starting kindergarten last month – and I hate to be the guy who’s like « hey BTW just wondering if you knew your kid might randomly not wake up some morning? » Ultimately the mom in question is a biologist and a very thorough person and I’m going to trust that she’s getting conscientious enough care that she’s already aware of this risk.
I was sort of surprised to read the advice to sleep with the epileptic child in the room though. I guess if they have traditional seizures where they might jerk around or otherwise wake a parent up, maybe it would help to have the parent present. But if the seizure is a « silent » one, which it sounds like it may be in some cases, I don’t think the cessation of breathing would be enough to wake most adults sleeping nearby. By contrast, it seems like wearable pulse oximeters that alert someone else in your home if your blood oxygen or pulse goes into a dangerous zone might make a huge difference – they make the Owlet monitor for SIDS, not sure why this isn’t a thing the interviewed doctors recommend for adults.
Of course doctors should tell people, good lord. 1 in 1,000 is not such remote odds. Not to mention, it’s not the doctors life that might be lost.
The medical profession really needs to put its collective head out of its ass when it comes to patients autonomy.
I have two nephews, brothers that have this. My cousin slept in her 13 year old son’s room for a YEAR. Almost destroyed the marriage. Husband thought she was overreacting. At 17, he has a monitoring system, and is trying to get into the University in town. I suspect he did a thorough google and abandoned out of state dreams.
I had to find out about SUDEP in my late 30s via a friend’s daughter’s death; not one of my neurologists ever mentioned it despite my lifelong seizure disorders.
I am an adult with
. I work in para-sport and have only ever gotten better meds, information regarding comorbidity and (sometimes) even basic care because I’ve known enough to ask.
My epilepsy is reasonably well controlled however: I will never be insurable to drive (though killing someone while DUI won’t get your licence permanently revoked), I have difficulties with professional advancement because too many people know about my diagnosis even if they don’t know what it means, and even my best personal and professional support(s) are mostly helpful in first-aid type situations and have no concept of what my day-to-day looks like.
I’m not incapable though so medicine has little to offer, social service ministries don’t consider me in their catchment for services and employment services law is effectively unenforceable. Oh and it’s all excusable because I might die at any moment and am otherwise considered an unreliable reporter.
For some of us this isn’t news but I kinda-sorta-maybe wish it was (as of yet) undiscovered news for the rest of you.
Well. Time to go tell my partner I love them 20 times in an hour, I guess.
This took my cousin’s 22-year-old daughter last year. She came home with a bit of a headache, went in for a nap, and that was it. Both of her parents are nurses, and her epilepsy seemed very much being controlled with medication. Horrible shock to all of us.
She came home with a bit of a headache, went in for a nap, and that was it.
Well, you two can just come over and rock me to sleep at night from now on, or find me a live-in partner so the kid won’t be the one to find me next morning.