Epilepsy and SUDEP

September 9, 2019 1:07 PM

Sudden unexpected death in epilepsy (SUDEP) is comparatively little known, even among people with epilepsy or families. More than 1 out of 1,000 people (and 1 out of 4,500 children) with epilepsy die each year from SUDEP (CDC). It's hard to know for sure due to current stigma and misreporting. In adults, if seizures are uncontrolled that risk can rise to 1 out of 150. In July, Cameron Boyce (Wikipedia), Disney star of the Descendants movie series and other movies and TV shows, died from what was initially described as a "seizure" but was later confirmed to be SUDEP. J. R. Storment, co-founder of Cloudability, recently lost his 8-year old son to SUDEP. Medical professionals actively debate about how much to share with patients and parents about SUDEP. Although the trend is toward more disclosure. There is on-going active research and SUDEP and SIDS may be related.
posted by skynxnex (25 comments total)

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 other side effects that have turned our lives upside-down.
posted by clawsoon at 1:30 PM on September 9, 2019 [5 favorites]

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... :-(
posted by clawsoon at 1:44 PM on September 9, 2019 [2 favorites]

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.
posted by skynxnex at 1:57 PM on September 9, 2019 [1 favorite]

A friend of mine died from epilepsy in his 20s. Fucking horrible.
posted by pelvicsorcery at 2:03 PM on September 9, 2019 [2 favorites]

As someone w/ epilepsy, under control nevertheless, this is news to me.
posted by iamck at 2:10 PM on September 9, 2019 [8 favorites]

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.
posted by sallybrown at 2:23 PM on September 9, 2019 [6 favorites]

I also had a friend die from epilepsy in her early 20s. I miss her.
posted by tooloudinhere at 2:27 PM on September 9, 2019 [5 favorites]

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.
posted by skycrashesdown at 2:31 PM on September 9, 2019 [11 favorites]

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.
posted by Oyéah at 2:59 PM on September 9, 2019 [7 favorites]

I also had a close friend die of epilepsy in his 20s. Had no idea it was relatively common.
posted by Akhu at 3:03 PM on September 9, 2019 [1 favorite]

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 Danny Did Foundation and the Chelsea Hutchison Foundation 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. :)
posted by cosmac at 4:44 PM on September 9, 2019 [41 favorites]

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.
posted by Big Al 8000 at 5:12 PM on September 9, 2019 [3 favorites]

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.
posted by rikschell at 5:22 PM on September 9, 2019 [3 favorites]

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 lot about SUDEP and therapy dogs and the twists and awful turns of their diagnosis. More funding for science here, please.
posted by librarylis at 5:38 PM on September 9, 2019 [1 favorite]

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.
posted by brook horse at 6:07 PM on September 9, 2019 [6 favorites]

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.
posted by Oyéah at 8:53 PM on September 9, 2019

I don’t know if my sister knows this information and, quite frankly, I have no idea how to broach the subject.

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.
posted by hippybear at 8:55 PM on September 9, 2019 [3 favorites]

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.
posted by potrzebie at 10:51 PM on September 9, 2019

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.
posted by fshgrl at 11:22 PM on September 9, 2019 [7 favorites]

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.
posted by markbrendanawitzmissesus at 12:12 AM on September 10, 2019 [1 favorite]

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.
posted by _paegan_ at 5:21 AM on September 10, 2019 [3 favorites]

I am an adult with idiopathic TLE. 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.
posted by mce at 6:45 AM on September 10, 2019 [2 favorites]

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.

Well. Time to go tell my partner I love them 20 times in an hour, I guess.
posted by brook horse at 7:18 AM on September 10, 2019 [10 favorites]

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.
posted by xingcat at 7:38 AM on September 10, 2019

She didn't have seizures as an adult, this is the only diagnosis they came up with after autopsy.

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.
posted by Flannery Culp at 10:04 AM on September 10, 2019 [8 favorites]