Friday, July 30, 2010

Now I know why I worry

As usual, I was going through articles this morning looking for new research results and other  new and exciting things in the wonderful world of diabetes.  For some reason lately, there have been quite a few articles on Dead in Bed Syndrom.  I think its because I am trying to get my son to begin to wake up to alarms, lows, and work a little more on his own care. Okay, maybe its not personal and its just coincidence but it did make me wonder.

Today's article did more than just make me wonder, it made my heart stop.  I remember way back when my son was first diagnosed. I read everything that the hospital gave me and then read it again. In the literature there was a brief pamphlet on Dead in Bed.  They suggested that a person with diabetes could go low in their sleep and never wake up.  My first thought was...I will never, ever sleep through the night again and I have lived by that for over ten years.

I automatically wake up now.  There are no 3 am alarms set for me.  I wake to use the washroom. I wake to strange sounds. I wake to odd dreams.  All of these things are reasons for me to stop in my child's room and verify that his blood glucose reading is okay.  On more than one occasion it hasn't been and I have thanked the moon, the stars, and anyone who got me up that night to catch the problem before it got a lot worse.

When I read the article this morning I realized that people who think I am crazy for getting up so often have no idea and that I am right.  Many who question my actions do so out of concern.  The physical toll it has taken on my body is evident by the medications that greet me at breakfast each day.  Its because of this and the fact that my chid is not with me 24/7 anymore that I have really worked this summer to get him to wake up to an alarm and test himself. I still wake up and check his meter or test him again but he is managing to wake up at least 50% of the time and test.  This is huge for a child who can sleep through a fire alarm!

So what was the big scare factor in the article? What validated me and sent me back to testing like a maniac? A MedLinx article that stated "The incidence of “dead in bed” syndrome is not known but studies suggest figures of between 4.7 and 27.3% of all unexplained deaths in type 1 DM."  Five to TWENTY EIGHT percent????  That is beyond unacceptable.  That is downright terrifying!

Its funny, we have worked so hard to get out kids pumps (and in some places the fight still continues) and now it looks like we will need to bring this information forward to help us ensure that we can at least have the help found in CGM technology.  None of it is a cure but we want our loved ones to live long enough to see a cure. 

4 comments:

  1. Oh but Barb, according to the "medical professionals" around here that educate the school personnel, you can't die from a "low" remember???? (sigh) perhaps I should forward the info to them (wink)

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  2. Trish, that's why we need to keep a copy of this study and remind them that they are a LOT behind the times. Diabetes KILLS!
    Banging my head along with you :(

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  3. How can I see a copy of this article? I am interested in sharing it with people who think I need to "let go more" of diabetes control for a 14 year old. Thanks Colleen

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  4. If you go to www.diabetesadvocacy.com under research, you will find the link to the Medlinx article. If you still can't find it let me know and I will find it for you. I agree...it needs to be shared! We are not overprotective nuts. This is serious and deadly!

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