Dead in Bed syndrome


(Stephen Grieco) #1

My son is just past one year living with Type 1 and I recently stumbled upon a reference to Dead in Bed syndrome. The information I found scared the crap out of me, but our endo nurse practitioner said, while she has heard of it, she's never seen it with her patients. I was just wondering two things:

1. Does anyone know anything about this syndrom? http://www.childrenwithdiabetes.com/d_0n_g00.htm

2. We give our son a pre-bed snack (mix of low-glycemic carbs, protein and fat) to keep him from getting low during the night. Does anyone have general suggestions for such a snack (carb total, types of food, etc.)?

Thanks, Steve


(vulcanrider) #2

Dear Steve,

This has been a fear of mine since my son was diagnosed 9 years ago.  We found that protein kept his sugars more steady during the night, but for  safety and piece of mind, I would check him a lot in the middle of the night.  He liked cheese and peanut better on crackers.  He is 18 now and still lives with me and is very independent, but I still get up and make sure he is okay if I have doubts.  Unfortunately, it's part of being a parent of a Type I diabetic. 

Teresa


(rmeadowsaprn) #3

I just read your post. Scary, I know. I am petrified at the thought. I also look forward in my daughter's life and fear for the one day (though seemingly far away) that she is "on her own" and alone. There was arecent story about a 27 year-old man who had pump failure and died after the pump accidentally gave him a lethal dose of insulin while he was asleep. The only answer to the paranoia that I would imagine most parents feel, is the continuous glucometer.

My daughter has been diagnosed for two years now. She has hypoglycemic unawareness. I was checking her every night almost. When pump therapy was started, her BGs were much better managed. Her A1Cs were consistently 6.7. But she would still have lows and highs, of course. I got her the continuous glucometer. WOW! If her BG drops, it alarms. If it goes too high, it alarms. Her A1C 3 months after the CGM was 6.3. Not because I was doing anything better, but because with the CGM she could not get too low or too high without immediate correction. It has been wonderful! However, I have seen children become a bit obsessed over the CGM, since it monitors every 5 minutes. You can't rely on it 100% because of the difference between tissue and serum glucose levels, but it is invaluable for catching levels before they become a problem.


(Monique H) #4

Hey, Steve,

Sorry my response is so tardy, but I'm trying to "catch up" :)

I personally don't feel that "Dead in Bed" syndrome is limited to children with diabetes.  It can happen to any child, is referred to as "Sudden Unxplained Death in Childhood" (SUDC). and is distingushed from SIDS by the fact that the child is over 1 year old.  I knew a woman in my previous mom's group who lost her (non-T1) child to SUDC, and became an advocate for families who have suffered similar losses.  Within the Juvenation community, I know of only one parent who has lost their T1 child to unexplained death during sleep. 

Please do not add this VERY rare and unexplained condition to your very long list of concerns about your child.  We do what we can, we get educated about T1, we do our best to keep up-to-date on treatments and management.  That's the best we can do.  If you're nervous about mid-night lows, test at about 2-3 am for 3-4 nights in a row to see if there is a trend.  If now lows show up, you're probably okay.

BTW, our ped endo told us that ice cream is an excellent bed-time snack when given about once a week....carbs, fat and protein....can't beat that :)

Blessings,

Mo

 


(JDVsMom) #5

Adults can also die suddenly in their sleep - Sudden Cardiac Death (probably among other reason). Can strike apparently healthy adults and is usually thought to be a crazy arrythmia (erratic heart beat). It is different than a heart attack. The FDA pulled some drugs off the market in the 90s because it was believed they had a higher propensity to cause these erratic heartbeats and all drugs are tested for them now, but has always been a very rare event.

 So I agree with Mo - don't bother adding to your list of worries unless you ENJOY ;) worrying about all your family members and yourself on the off chance that any of them might not make it thru the night. Yes, you should make sure your child's BGs are in a good range and do middle of the night checks as you see fit, but I wouldn't obsess about it. 

My son loves cottage cheese and a graham cracker at bedtime.