- advertisement -

a dreaded question....

Discussion in 'Parents of Children with Type 1' started by NatBMomto4, Mar 29, 2010.

  1. NatBMomto4

    NatBMomto4 Approved members

    Joined:
    Mar 24, 2010
    Messages:
    437
    I'm new to this forum - my DS was dx'd 2 weeks ago today. I read the horrific story about what happened to Trent last week and although I am afraid of the answer I may hear, I just have to ask....is this common? Do a lot of T1 children have their bg drop so low during the night? If so, how do we ever sleep again? Is there some sort of monitor with an alarm to warn us so we can go to our child and help them? We are so new to this that our Dr won't even discuss pumps with us yet, and honestly, I know nothing about them anyway, but I am terrified that what happened to poor Trent could happen to my son. What do you all do - or is this a rare occurance?
     
  2. Sari

    Sari Approved members

    Joined:
    May 19, 2006
    Messages:
    545
    No, this is not common. And most often, I think kids tend to have patterns. We check Ross when we go to bed at 11, depending on what his BS is, determines if we check him again at 2:30. He is usually pretty consistant. The only alarm that I know of is if you have a pump and can get a CGMS.

    Good luck, and don't panic - just take it in stride and you will adapt to your new "normal" life.
     
  3. liasmommy2000

    liasmommy2000 Approved members

    Joined:
    Oct 31, 2006
    Messages:
    2,314
    Honestly as far as I'm aware it's quite rare.

    They do make continuous glucose monitors that can help with detecting lows. Unfortunately they are not yet as accurate as regular meters and many still have trouble getting insurance to cover them. I imagine they will become pretty standard in the next few years.

    Many here check frequently at night. We do not as much as some unless there are extenuating circumstances, but we do check at least once each night.
     
  4. frizzyrazzy

    frizzyrazzy Approved members

    Joined:
    Dec 23, 2006
    Messages:
    14,141
    not common at all. I have been trying to put this in some sort of context . Children die every day - of all sorts of things. They get hit by cars, they get abducted, they are hit by stray bullets. All things which their parents have no control over. But we don't let that consume us, right? we let our kids ride in cars, we let them play outside, etc. Children dying of type 1 diabetes does, sadly, happen, and it hits home for all of us because it just feels like one more risk to their lives. But it doesn't happen often. We've heard about 3 recently, but prior to that, in the nearly 5 years we've had diabetes, I think I've only heard of a few others. My feeling is that, like everything else in life, we have to use the tools at hand, to the best of our abilities, and hope nothing happens. Our kids are at more risk of dying from being in a car accident than from diabetes right now. :)
     
  5. StillMamamia

    StillMamamia Approved members

    Joined:
    Nov 21, 2007
    Messages:
    13,195
    Hi and welcome:cwds:

    I think it is a rare, to be honest, but it is there, very very unfortunately.

    The CGMS is this

    http://www.childrenwithdiabetes.com/continuous.htm

    But they do cost some and the sensors need to be replaced often.

    We have been in this D journey, and do not have a CGMS. We sometimes test at 3am, but, reading about the recent deaths, has been a wake-up call and I will test diligently now. At least, I'll try. I'm only human.:(

    I think the fear is there always, but you do learn how to cope with it, without it being the main focus everyday.

    Frequent testing, of course, but what the future holds no one knows, D or no D.
     
  6. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    Thank you, Michelle. :cwds:
     
  7. BrokenPancreas

    BrokenPancreas Banned

    Joined:
    Aug 9, 2009
    Messages:
    1,517
    The CGMS, at least the Navigator, is extremely accurate.
    It beeps very loud at a number you choose.
    I can't imagine life without the Navigator...
    I would fight for it if I were you, or anyone
     
  8. Toni

    Toni Banned

    Joined:
    Sep 14, 2009
    Messages:
    2,882
    This is very rare. I have not worried about it the past two years, was worried first two. We do check nights at either 12, 2am and 3:30am or 12 and 2:30 am. Cgms would be very helpful, though you could sleep through cgms alarm; glad they are making them louder. It can happen; I worry more about this in the future, if she is out on her own and goes to a party, one or two drinks..... worry a lot more about the adults. Very sad news, the worst news..... wish nobody had to deal with this.
     
  9. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    Im so sorry you got scared:( No this does not happen very often. I wrote a threat awhile back about what happens during a severe low, I just bumped it. As Michelle pointed out, there are unfortunately many automobile tragedys every year. Talk to your endo or CDE about your concerns and ask them how often you need to test at night. We usually test at least once per night unless Steven is sick or his blood sugars are off. Tragedys like this can occur because of a mistake in insulin dose, wrong insulin being given. Ive given my son 7 units of humolog once instead of lantus and this was before his bedtime snack. Thankfully I realized my mistake immediately
     
  10. PatriciaMidwest

    PatriciaMidwest Approved members

    Joined:
    Mar 2, 2010
    Messages:
    1,297
    Thank you for putting this in perspective. It's been weighing on me a lot also.
     
  11. GinaB

    GinaB Approved members

    Joined:
    Jun 15, 2009
    Messages:
    345
    We don't pump but we use the dexcom for continuous glucose monitoring. We really like it. Joseph rarely let's us do finger pokes at night so the cgm makes it so I can see his blood sugar and if he's rising or dropping. It's great for nightime.
     
  12. frizzyrazzy

    frizzyrazzy Approved members

    Joined:
    Dec 23, 2006
    Messages:
    14,141
    which isn't to say that, probably like the rest of us here, I'm not sleeping a whole lot lighter these past few nights. :( and giving my baby many many extra hugs.
     
  13. StillMamamia

    StillMamamia Approved members

    Joined:
    Nov 21, 2007
    Messages:
    13,195
    You do have an awesome way to put things into perspective, Michelle:cwds:, and I truly appreciate that.

    I've had Ian sleep with us lately too.;) Just waiting for "that fear" to calm down a bit, you know?
     
  14. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    I still remember the first time I heard about it. It was, and still is, awful. I asked my endo and he said it was extremely rare and got a little upset when I pushed for more info...see, it was rare for my child to get this disease - so rare doesn't mean much to me now a days!
     
  15. colebenmom

    colebenmom Approved members

    Joined:
    Mar 25, 2009
    Messages:
    463
    Thank you for this. I cried all day Saturday (on and off) and have had a pit in my stomach since. My rational head keeps telling me all of the things that you wrote but I can not believe how this news has affected me. It did hit close to home but you are right, we can not be consumed.

    To the OP, I hope this thread puts you at ease a little bit. You will find good information here on CWD and you will decide what works for you and your family. I test my ds when I go to bed (around 10 - 11) and again @ 3am.

    Hang in there.:cwds:
     
  16. RosemaryCinNJ

    RosemaryCinNJ Approved members

    Joined:
    Mar 9, 2008
    Messages:
    3,571
    It is not common but sadly it does happen and it is very rare. What helps a lot for me with my daughter is always giving a bedtime snack usually a protein snack that will keep her steady through the night..And yes when first diagnosed you should check on your child throughout the night that way you will know if your child is dropping, or what changes if any need to be made in insulins..etc..Welcome to CWD, you have come to the right place and know you are not alone...Hugs!!
     
  17. nanhsot

    nanhsot Approved members

    Joined:
    Feb 20, 2010
    Messages:
    2,626
    My son was diagnosed just about a month before yours, so I am in a similar boat and I am honestly having a hard time coming here right now as the fear overwhelms me sometimes. Not logical, I realize, since knowledge is power, but it is really shaking my core right now.

    I can tell you some of the things I do (we are MDI, as I assume you are, and our kids seem similar in age and activity level, though mine does different sports...rodeo/football/weights!)

    I try not to allow injections past about 7pm. This has been a very hard adjustment for our whole family as we often do eat late and have a laid back schedule, but it helps my peace of mind immensely to know that the fast acting is essentially gone by 11p.

    He MUST test just before bed and eat enough to get over 100 if he's below that.

    We do our basal at night, I know some will disagree but from what I understand it peaks around hour 12, so my comfort level is such that I'd rather that be wake up time when his hormones will have him go high anyway, generally.

    On high activity days I have him eat an uncovered/longer acting carb after he works out, like a granola bar, otherwise he does go low before bedtime.

    Clearly I have no guarantees that any of this would prevent any big problems, but I feel like I at least am doing SOMETHING.

    It is a terrifying, mind numbing concern.
     
  18. sooz

    sooz Approved members

    Joined:
    Dec 4, 2009
    Messages:
    2,330
    Since you are new to this and your son is 12 I also want to mention that there are service dogs that are trained to detect lows in people and that is another option. It seems to be a controvertial topic of conversation here, but I am just mentioning it as an option. I think they sound wonderful, especially for people who live alone.

    I also feel that this is a rare tragedy and we just need to carry on as best we can, knowing that the truth is, when our children were diagnosed with D, that was the day their lives were saved. And how blessed we are to live in a time when they will live long and happy lives. Technology and protocols are only going to get better and better. And Im sure you will agree with me that it has made us treasure our children even more, if that is possible. It is going to be ok. Hang in there.
     
  19. Judy&Alli

    Judy&Alli Approved members

    Joined:
    Jan 26, 2008
    Messages:
    3,159
    I am sorry you had to read this so early on in your childs dx. It took me a few months to hear of dead in bed syndrome and it really shook me. But reading about it as a syndrome, and actually hearing of someone dying is unbearable!!! HUGS it is very rare!!!

    Here is what we do. My daughter has a cgm but I still check her at midnight without fail since she was dx'd. I use that midnight number as a jumping point on whether or not she needs to be checked again through the night. I like the midnight number because she has no active bolus insulin, or active food in her body at that time. About half the time that number requires some action from me, whether it be a insulin correction, or carb correction. You will find a routine that works for you, and it will become second nature.

    Welcome to our little family!!! Ask any questions and do not be afraid to post!!!
     
  20. Flutterby

    Flutterby Approved members

    Joined:
    Nov 11, 2006
    Messages:
    14,623
    I've been on this board for 3.5years, my daughter has been diagnosed for 4.. This is the first time we've had something like this on the board.. there have definitely been scary situations, but never had this happen.

    We use a cgms (continuous glucose monitor) to help with these types of issues.. it alarms (but the alarms aren't loud enough to really hear from her bedroom to ours so we get up multiple times a night).. it reads the bg by the innerstitial fluid everyminute and gives you a reading every 5 minutes (the average of the last 5 minutes gets displayed). It will alarm if bg is going to high/low, to fast in either direction and also predict a low or high that is coming.

    Most endo's have certain standards on pumps, like waiting a year.. it doesn't have to be that way.. if you don't like your child's endo, move on to another one.. they work for you, not the other way around.. You should, however, know the basics of carb counting, figuring out the calculations and know how to draw up insulin in a syringe or use an insulin pen before moving on to a pump, incase of pump failure.

    Glad you found us and sorry to hear about your son's diagnosis.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice