article on S.U.D.E.P. in the Boston Globe

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Good Article. I agree with the doctor though and I wouldn't blame him. Epilepsy already comes with enough worry. I know when my TC's were only nocturnal My mom made me sleep next to a baby monitor until I was in my late teens till I finally had a blow out with her after sabotaging several of them. There definitely should be more awareness though. It would be nice to see more public figures like John Roberts speak out like David Axel rod has done.
 
Most parents who have kids with E don't know about S.U.D.E.P. Although it doesn't happen often, it does happen. I posted a while back about a lady I met at our local Starbucks whose daughter passed away due to S.U.D.E.P. Chelsea was only 16 at the time. Other than age, a very similar story. Her parents had never heard of S.U.D.E.P. Now her parents have started the Chelsea Hutchison Foundation for awareness of SUDEP and seizure awareness dogs.
 
A good article, indeed. I didn't know about SUDEP until less than a year ago. I'm not really worried about it for myself, because I am not in one of the high risk categories, but there is still no way I am going to tell my wife about it! She is worried enough about my relatively minor partial seizures.
 
Seven percent? I had no idea it was that high. I didn't know about SUDEP until a few weeks ago.
 
We had a fatal accident inquiry in Scotland (inquest in England, not sure what it's called elsewhere) after SUDEP claimed the life of two teenage girls. It was recommended as a result that EVERYONE with epilepsy should be told about SUDEP. I think Rosie's first seizures were before this but when they resumed, the neurologist mentioned it but only in a very oblique way - if you hadn't already known about it you wouldn't have known what he was talking about. http://www.scotland-judiciary.org.u...eaths-of-Erin-Casey-and-Christina-Fiorre-Ilia
 
IT IS VERY SCARY to think about but the facts have to be revealed. Don't know if I feel better or worse?????
M
 
Interesting article for sure... makes one think of their life with epilepsy. I have an epilepsy meeting tonight and I will share this article. We can talk about it.
 
We've had CWE members lost to SUDEP, and I can imagine how devastating it must be to friends and family. I think it's good that SUDEP awareness is growing, but it also seems like there is very little that can be done to prevent it until they narrow down the risk factors.
 
Nakamova said:
We've had CWE members lost to SUDEP, and I can imagine how devastating it must be to friends and family. I think it's good that SUDEP awareness is growing, but it also seems like there is very little that can be done to prevent it until they narrow down the risk factors.
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That's one of the reasons I hope my wife never finds out about it. Here's a link to an article that has a little more info on the risk factors:

http://epilepsy.med.nyu.edu/epilepsy/sudden-unexplained-death-epilepsy-sudep
 
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arnie said:
That's one of the reasons I hope my wife never finds out about it. Here's a link to an article that has a little more info on the risk factors:

http://epilepsy.med.nyu.edu/epilepsy/sudden-unexplained-death-epilepsy-sudep
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I don't mind telling my family about SUDEP because of the type of seizures I've experienced over the years. Several times they thought I was going to die anyway, so I thought it was in order that I tell them the facts. And as Nak stated, we've lost members on CWE to this mysterious disorder. Several were adults, too. The link that arnie posted doesn't have any more info than the one the epilepsy.com site provides on SUDEP. I feel this tells it like it is:

http://www.epilepsy.com/newsletter/jan14/sudep-surveillance
It is known that about 1 in 150 persons with poorly controlled epilepsy dies of SUDEP (sudden unexpected death in epilepsy) every year. Reports of the few cases of SUDEP that have occurred in patients admitted to hospitals and epilepsy monitoring units have identified several seizure-related mechanisms for SUDEP, including breathing difficulties, heart arrhythmias, and prolonged coma following seizures, thus leading to impaired protective reflexes. However, these few cases may not be a representative group of all those who die from SUDEP because of the artificial circumstances surrounding their death, including tonic-clonic seizures induced by rapid withdrawal of medication during hospitalization. There are cases of SUDEP in people without known tonic-clonic seizures or that have seemingly good seizure control. A better understanding of the true incidence, mechanisms and risks for SUDEP requires a population-based approach to the condition. That is, by examining all of the SUDEP cases that occur in a predetermined geographic area, one obtains a more accurate understanding of the risk factors and possible mechanisms, than if one only looked at cases that occurred at a few epilepsy centers. In addition, population-based studies are the best way to get an accurate estimate of the true incidence of SUDEP.
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I'm wondering whether these SUDEP cases are because of status?
 
Not necessarily. Usually they happen while one is sleeping and they may be related to heart arrythymias. They don't know.
 
Cint said:
Not necessarily. Usually they happen while one is sleeping and they may be related to heart arrythymias. They don't know.
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I lost my wife to this, she was asleep and had a grand mal.
this was in 1993 and very little was said about it, when I told her neourologist about it he had said that this was a very rare accurance and not too much has been documented..The coroner listed her death as natural causes related to a seizure disorder...
I myself am very glad that more is coming out about this.
My son is aware of the possibility that this might happen to me and therefor is able to deal with this in a less stressful thought.
Sometimes its ok to let someone close to you know of any possibilities...
:e:
 
So sorry to hear of your loss Rich. Stay well.
 
Actually, the article I cited does have some additional information, especially on risk factors and precautions. Here is some of it:

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What are the risk factors for SUDEP?

SUDEP rates are highest in young people aged 20-40, and greater in men than women. Another major risk factor for SUDEP appears to relate to the severity of the epilepsy, as SUDEP is more common in people with:

frequent convulsive seizures
early age of onset of epilepsy
long duration of epilepsy
higher number of antiepileptic medications, and at high doses
frequent medication changes

On the other hand, SUDEP is rare in patients with new onset epilepsy, in patients without convulsive seizures as a seizure type, and in patients with well controlled seizures.
Safety Precaution Tips

A few safety precautions can minimize the chances of SUDEP:

Patients should make sure to take the medications prescribed for them.
Patients should visit with their doctor regularly, especially if convulsive seizures are not completely controlled.
Adult patients with a high likelihood of tonic-clonic seizures in sleep should be supervised whenever possible. (SUDEP is extremely rare in children with epilepsy and in other patients who are well monitored. In fact, supervision has emerged as a protective factor for SUDEP, independent of seizure control.)
Basic first aid should be provided during a seizure, including rolling the person onto one side, checking respiration and avoiding putting any object in the patient’s mouth.
Family members and/or caregivers of patients with uncontrolled convulsive seizures should learn cardiopulmonary resuscitation.

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and the link again to the whole article:

http://epilepsy.med.nyu.edu/epilepsy/sudden-unexplained-death-epilepsy-sudep
 
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