Hi everyone,
Here are a few recent articles from Diabetes News Hound.
Dead in Bed Syndrome: A Candle for Eilish
Lilly Pulls Plug on Type 1 Phase III Trial
Understanding the Brain May Lead to Life Without Insulin: Study
love for eilish <3
The childrenwithdiabetes.com site and their Face Book site have a lot of activity involving Eilish's death. I post on that site and the members there are taking it very hard. My heart goes out to the child and the family.
This is horrible. I feel really bad for the parents. I know how it feels because it happened to me too. My 14 year old son died in his sleep on June 24, 2001. Like the article said, her parents will probably never really know what happened or why. Nick's autopsy listed cause of death as unexplained or unknown or something like that. I cried when I read the article because it brought it all back.
I know these people are hurting. Please pray for them or think good thoughts or whatever you do, for them.
To you with diabetic children, did your doctor or educator tell about this? Ours never did. Maybe they think it is a statistical anomaly, but if happens to you it's 100%, My brother's kindergarten teacher's daughter also died this way. They lived close to us and the daughter even babysat for Nick a few times. I guess they don't really talk about it because they don't know what causes it and it is very rare? And, what could you do about it anyway? We were very vigilant with Nick's care as was Elish and her parents from what I've read.
This hurts. I'm sad. I don't know what to say.
much love for you, ddrummin. i know i don't understand your pain, but i never want to see friends hurt. many hugs.
<3<3<3
Aw, this is sad news. I cannot express how deeply sorry I am, but my heart & prayers go out to Eilish and her family and to all those who have also experienced such a tragedy, including ddrumminman.
My Heart and sincere sympathy goes out to Eilish's family and friends. As well to all those we have lost to Diabetes. You are our Angels;0)
This really got me bad when I first read the news on CWD. I am still having a hard time with it. Nobody told us about dead in bed syndrome. I knew night time lows could be dangerous but this is different.
I'm right there with you Jessica, I'd never heard of this until I started reading online. So incredibly sad, and scary because it doesn't seem particularly preventable. I mean, from everything I've read the deaths occur just as often as not to kids who are well cared for and whose parents are informed and watching their blood sugar carefully. So what do we do as parents beyond what we already do? I already check Sarah, usually twice before bed (once about 30 minutes before and again at bedtime, so I can see if she's stable, climbing or dropping). If I wake during the night I usually can't get back to sleep unless I check her again, so I do. I'm sure this is similar to what most parents do.
I read an article on CWD that seemed to say that they weren't even completely sure it was hypoglycemia, and might have been heart problems caused by early nerve damage. Makes me wonder if anyone who has died this way had a CGM. Wouldn't that provide a record of the nights activities?
I'm so sorry for all the families who have lost to this. It's just horrible and another thing that scientists need to find a way to fix, NOW!
Michelle I check Ri if she is below 200 at 9 midnight 2 and 4ish. Its hard to deal with this as a parent. I asked on cwd how we cope with this and I still am not sure. I know I am not letting the fear of this control me or Riley (not that she knows about it) I cant let it. I am not in control of this. I have to just let us both live as long as we both can. I have to remember I am a mother not a pancreas. It really is hard as a parent to give up thinking we have some control over this but we dont and never will. We just have to hope this doesnt happen and that we teach our kids enough about their care that once they leave the nest they can care for themselves. Even with all this in my head my heart breaks at the thought this could happen to any of us parents. It also breaks for the parents who it has happened to.
[quote user="Michelle"]
I read an article on CWD that seemed to say that they weren't even completely sure it was hypoglycemia, and might have been heart problems caused by early nerve damage. Makes me wonder if anyone who has died this way had a CGM. Wouldn't that provide a record of the nights activities?
[/quote]
Everyone jumps to the conclusion that it must have been low BS. I'm not so sure. Many of us, at least me anyway, have experienced severe lows where we had to be rescued and didn't die. I've read cases of people trying to kill themselves by taking massive doses and they didn't die. While in college, I once woke up and a cop was standing over me pouring regular coke in my mouth to bring me out of an extreme low. People heard me moaning or something from the hall. Didn't kill me. Nick would get low at night and my wife would hear something and we'd go in and bring his BS back up. He didn't die in those cases. And some were pretty extreme. She didn't hear anything this time. Not scientific, but makes me suspicious it was something else.. Another thing is that they die in bed with the bed undisturbed. They don't try to get up or squirm around or fall out of bed or anything. No survival instinct seems to kick in at all.
For some reason they can't get a BS in an autopsy. Not sure why. Seems they can get everything else like drugs or poisons, etc. but not BS.
I agree with Jessica though in that I don't think as a parent you can over worry about this. I'm not sure it's preventable and it is extremely rate, except for Elish's parent's and I, for whom in it 100%,
[quote user="DDrumminMan"]
For some reason they can't get a BS in an autopsy. Not sure why. Seems they can get everything else like drugs or poisons, etc. but not BS.
[/quote]
i'm assuming they can't get a BG after death because glucose is a result of metabolism. when the heart stops beating, metabolism ceases. what i'm guessing is that because things like hair and nails continue to grow after death, the glucose that's in the blood is used until it's depleted. so to do a blood test after death would have a result of 0. maybe if the blood test was taken at the exact time of death, one could be obtained. but autopsies are never performed immediately.
that's just my guess though. i don't actually know why.
[quote user="DDrumminMan"]
[quote user="Michelle"]
I read an article on CWD that seemed to say that they weren't even completely sure it was hypoglycemia, and might have been heart problems caused by early nerve damage. Makes me wonder if anyone who has died this way had a CGM. Wouldn't that provide a record of the nights activities?
[/quote]
Everyone jumps to the conclusion that it must have been low BS. I'm not so sure. Many of us, at least me anyway, have experienced severe lows where we had to be rescued and didn't die. I've read cases of people trying to kill themselves by taking massive doses and they didn't die. While in college, I once woke up and a cop was standing over me pouring regular coke in my mouth to bring me out of an extreme low. People heard me moaning or something from the hall. Didn't kill me. Nick would get low at night and my wife would hear something and we'd go in and bring his BS back up. He didn't die in those cases. And some were pretty extreme. She didn't hear anything this time. Not scientific, but makes me suspicious it was something else.. Another thing is that they die in bed with the bed undisturbed. They don't try to get up or squirm around or fall out of bed or anything. No survival instinct seems to kick in at all.
For some reason they can't get a BS in an autopsy. Not sure why. Seems they can get everything else like drugs or poisons, etc. but not BS.
I agree with Jessica though in that I don't think as a parent you can over worry about this. I'm not sure it's preventable and it is extremely rate, except for Elish's parent's and I, for whom in it 100%,
[/quote]
I keep relating it to SIDs but for diabetics. Its the only way it makes sense to me and even then is random with no explainable reason other than its because they are diabetic. That makes me angry as a parent. I did worry about sids when they were babies but once they got to a certain age I stopped. This makes me angry because I dont know if I can ever stop worrying about it. I just know I cant let it affect us in our day to day living.
I am so sorry this happened to you and your wife. I really cant imagine how horrible it is for you or Eilish's parents. (((HUGS)))
My heart goes out to Eillish's family and all families that have lost a loved one to D. No one ever told us of this..only because of those like DDrumminMan have I learned of it.The sadness of this happening to any family is so great.My heart breaks of knowing this has happened.I try to light a candle on every site I can-I have not learned how to post one on Juve. yet.My prayers,my thoughts,my heart to this family...
[quote user="meme"]
My heart goes out to Eillish's family and all families that have lost a loved one to D. No one ever told us of this..only because of those like DDrumminMan have I learned of it.The sadness of this happening to any family is so great.My heart breaks of knowing this has happened.I try to light a candle on every site I can-I have not learned how to post one on Juve. yet.My prayers,my thoughts,my heart to this family...
[/quote]
Hey meme. You put pictures in with the insert media button in the above toolbar. Just click
