- advertisement -

please pray for this family.. ( this is sad and scary ) warning

Discussion in 'Parents of Children with Type 1' started by zimbie45, Nov 24, 2009.

  1. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    I agree with Sarah and stand beside my original post. We do not have the full story about what happened to this boy beyond the fact that he had a seizure at night and passed away. Will that make me better able to prevent it happening to my child. I dont really see how:confused: If my husband or myself are already getting up and testing at least once a night, that is sufficient. To be ignorant of the full story is to have people become panic stricken and feel that they have to be hypervigilant and test every hour on the hour. IMO that raises the risk of parents becoming ill, not getting enough sleep to drive safely and possibly making mistakes in diabetes care because of exhaustion.

    What happened to Alec is a horrifying nightmare but it is a rare occurence. More children die in car accidents and in violent crimes then die of seizures during the night. I think its fine that Chandra posted this and i have prayed for the family and will continue to do so. But I also respect Sarahs opinion and her right to have one. As I hope people will respect my right to an opinion whether they agree with it or not
     
  2. Dad of Daughters

    Dad of Daughters Approved members

    Joined:
    May 7, 2008
    Messages:
    421
    Sarah,

    I didn't say if you don't agree with the post you should be quiet. But 3 days ago on another thread, you did...

    Yes, in some ways a different situation. But in some ways the same. The other day, the OP wanted to start a discussion about possible triggers/causes of T1D. Here, for what could be many reasons, the OP wanted to share this sad story. In the same way you pointed out that the disgruntled poster the other day was not obligated to post on that thread, I pointed the same out to you. And I don't believe I did so in a disrespectful manner. No big deal, no hard feelings, not part of a CWD-damaging conformity that I know of.
     
  3. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Having monitored my dd's BG on a CGM at night for 2-1/2 years, I have seen that BG can be in-range and flat, then rise sharply, or plummet, within any given 30 minutes of any hour of any night. The human body must be amazingly resiliant to out-of-range BG's, because outcomes like the one mentioned in the OP are rare. Still, I can not imagine testing just once per night, or anything less frequently than every 30 minutes (recognizing of course that it would be nearly impossible to test that frequently on a sustained basis). On the couple of nights that our CGM was out of commission, I tested hourly and was amazed at how far out of range BG got even testing that often. We're lucky that BG variations usually don't have major consequences.
     
    Last edited: Nov 26, 2009
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    No, I told another poster that it was not cool to call someone's thread "stupid". Disagree, dissent, have a different opinion, fine, but I took issue with a member of CWD coming out an saying that another posters thread was "stupid". If you don't see a difference then ... well, then so be it.
     
  5. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    In a perfect world Darryl, everyone would have enough support and stamina to be able to do this. Its unfortunately not a perfect world. You may not be able to imagine testing once per night but that is something that is in my comfort level and many other parents of CWD. Many adults with type 1 d dont test at all during the night. They have to get up, go to work, take care of family. In other words, live.
     
  6. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313

    I was talking about data I have observed, and how that data has led me to believe that testing only once overnight may not be sufficient to insure safe BG's over a 10-hour timeframe. I was not making judgements about you.
     
  7. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    Thank you for that Darryl:cwds: Happy Thanksgiving to you and yours
     
  8. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Thanks Becky. I just edited my post to add: "recognizing of course that it would be nearly impossible to test that frequently on a sustained basis". Hopefully that clarifies where I am coming from!
     
  9. Toni

    Toni Banned

    Joined:
    Sep 14, 2009
    Messages:
    2,882
    I do think it is important to know the reason so we can help prevent this from happening in the future. Not implying in any way having one or two drinks in the holiday season is wrong; almost everyone celebrates; no blame implied in any way. Assuming the person was diligent in their care, how can we learn from this? Was it because of a series of lows in the few days before, too much exercise? cardiac problems? What causes this and how can we help prevent it. Very worrisome for older teens and young adults who are starting to manage on their own. Because even with cgms, you can sleep through the alarms. And cgms may not be reading accurately or lose contact. How can parents help their young adults when they are not there to do the overnight checks?
     
  10. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    Geez, I think Sarah said that becuase the poster called a post stupid - actually said this is a stupid post! Wow! I am just so surprised lately that in order to participate in a thread nowadays, it seems like you have to be in 100% agreement!
     
  11. Annk

    Annk Approved members

    Joined:
    Aug 4, 2009
    Messages:
    46
    So heartbreaking. That is why I check my son 3 times a night, every night. I get very little sleep for almost 3 years now, but I would probably kill myself if anything happened to him so I have learned to get by on very little sleep. I am absolutely shocked when I read how some people only check once a night or not at all. God Bless this family!!
     
  12. Annk

    Annk Approved members

    Joined:
    Aug 4, 2009
    Messages:
    46
    So so sad. Absolutely heart wrenching. That is why I check my son 3 times a night, every single night without fail. I have done this for almost 3 years now and I will continue to do so. I am absolutely amazed when I hear that people only check once a night or some not at all! How can you sleep? I know I would probably kill myself if anything happened to my son so I do what I have to do. God be with this poor family!!!
     
  13. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I sleep fine, thank you very much. We all do what works for US, not what works for other people. You don't get extra points in the D mommy hall of fame for being exhausted all the time. :rolleyes:
     
  14. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    I sleep quite well thank you. As I said in another post here. There is nothing to be gained by staying up all night and testing our children. Except of course the very real risk of being so exhausted that we get into car accidents or make dangerous mistakes when dosing our children with insulin. As we dont know what happened to this young man I would hesitate to say that he wasnt checked at night including the night he passed away. We may never know what happened to him. I wish his parents peace and hope if they ever come in here to get more information about diabetes they would also receive our support and understanding.
     
  15. Mom of 15 yr old

    Mom of 15 yr old Approved members

    Joined:
    Jan 14, 2009
    Messages:
    32
    So Sad

    This brings all of my fears to the fore-front. We just have to be grateful for every day, hour and minute of our lives. We just don't know when things may happen to change our lives forever. God Bless this family.
     
  16. MamaChrissa

    MamaChrissa Approved members

    Joined:
    Apr 20, 2007
    Messages:
    770
    I pass out most nights out of sheer exhaustion, as does DH. When do you sleep?
     
  17. Ellen

    Ellen Senior Member

    Joined:
    Oct 22, 2005
    Messages:
    8,240
    I understand why the OP posted this. I remember the first time I heard of the syndrome and wanted to be able to talk to someone who could make some sense out of it for me. How could I know about it and not worry myself sick over it? Having read the literature, I am assured it is NOT likely to happen although it does happen. It's important to keep in mind that this is RARE. Perhaps we may all benefit from THAT reassurance.

    I don't believe dead-in-bed (DIB) syndrome can be prevented. We can do everything right and diabetes can go awry. We can only try our best each day and 99.99% of the time, things will work out well long term. Although I've read many accounts of this happening over the years, it's still far and few between when we think of how many people live well with type 1 diabetes. While we want to find reasons, explanations about how/why it happened, we have no idea and will likely never know what happened to this young man, and it was not necessarily preventable.

    I've heard Stacy Joy Goodman's parents speak from the heart - they made a difference after their daughter passed as a result of DIB. http://staceyjoyfoundation.com/ .

    Sarah, I agree with you that there is no sense in speculating about what happened and I fully respect your view about how this post may not be helpful for many people and may actually serve to instill fear about something that may very well be beyond our control. I also checked infrequently at night over the years.
     
  18. ShanaB

    ShanaB Approved members

    Joined:
    Apr 4, 2009
    Messages:
    900
    I know this thread isn't about what I have quoted but I must comment on this. Get this, sometimes we only do a 1am check and then sleep until morning -- GASP! Do not judge others, it benefits no one.

    As for the original post, my heart is with this family, so tragic, so very sad.
     
  19. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    I know that kids can just drop dead from an unknown congenital heart defect. I know that they can die from all sorts of things. But DIB still fills me with terror.

    It helps that it's rare, but just knowing the potential is real is pretty terrifying. I just try not to think about it. We all do what we can do within our comfort levels to keep our kids and we get on with life knowing the odds are remote that DIB will take our children. But that fear is always lurking.
     
  20. Omo2three

    Omo2three Approved members

    Joined:
    Jul 11, 2008
    Messages:
    1,663
    Has anyone heard any follow-up stories on the family?

    I did read he was active teenager in another article, with a pump therapy. He was a baseball player. Had a good sense of humor, and very liable.

    I want to give his mom a big hug!!!!
     

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