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TX teen dies

Discussion in 'General Discussion' started by kvnc, May 9, 2014.

  1. kvnc

    kvnc Approved members

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    Have you heard about this?

    http://www.kvue.com/news/state/Sing...e-Direction-request-goes-viral-258104641.html

    I wish there was more information. Does "complication" mean hypoglycemia? Did she have a CGM?

    My daughter was diagnosed 2 months ago -- I get so scared when I hear about this happening. We got my daughter a Dexcom one month after diagnosis. Last night it had "???" for an hour around midnight. I couldn't fall back asleep until it was working again.
     
  2. sszyszkiewicz

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    Sad to be sure, whatever the reasons.

    There is risk everywhere. Each year 10's of thousands die and hundreds of thousands suffer serious injury in car accidents yet we all continue to drive. We reduce our risk by obeying whatever driving laws are in place, wearing seat belts, etc....

    By having a CGM you significantly reduce the risk of not catching a serious hypoglycemic event. With your Dexcom you have like a 90%+ chance of catching a low. That means you cut the chance of an undetected severe hypo by a factor of at least 10. The risk is not 0, but a factor of 10 is nothing to sneeze at and as time progresses the technology will improve. What we have now represents a floor, not a ceiling.

    You have the best tools available to detect and treat hypos. You are also diligent. It is not going to happen on your watch. Period.
     
  3. nanhsot

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    Yes, I've been following this story, all I've really heard is she died in her sleep, so I'm assuming hypo.

    She was a Camp Sweeney kid (my son also went there) and the camp has really rallied and someone began a fundraiser in her name to send a camper to Sweeney this summer. Original goal was $3000 for ONE camper. So far they have raised over $30,000 in her name for camp scholarships. Pretty neat. Here's the link for anyone interested in donating.

    http://www.gofundme.com/8x5eeg
     
  4. Jordansmom

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    I know you're only trying to reassure a frightened parent. But your statement is really offensive to good diligent parents who have lost a child in the night to type 1 diabetes. Some of whom read this forum and are members.:frown:
     
  5. Sarah Maddie's Mom

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    Agreed. Personally, I don't think there there is any productive way to discuss DIB on a forum like this and wish that there were greater admin restrictions on the posts.
     
  6. Megnyc

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  7. nanhsot

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    Knowledge is power, and to never talk about it, for me, seems like an insult to those who have died. I agree that it's irresponsible to tell a parent "it won't happen on your watch", because we all know the stories. But the stories need to be told. But yes, we need to always be mindful that there are moms out there reading who have experienced the worst.

    The links Meg posted were nice, and explain how I feel better than my words here do. It's a frightening possibility, and not something I choose to spend my day obsessing on, but it's not something I want to never be able to talk about here.
     
    Last edited: May 10, 2014
  8. hawkeyegirl

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    I don't have any problem with talking about DIB, but part of the issue is that so little is known about it. I also think that many cases that are reported in the media and Facebook as DIB are not, in that they have an identifiable cause that is not publicly reported. I do have a problem with people who turn every DIB into their own personal tragedy for attention. (I don't see that here, but do see it on FB.) It's not a phenomenon unique to DIB, but it is the one that hits closest to home for me.

    I do not worry about DIB any more than I worry about my children dying in a car accident. We take all reasonable measures to prevent both of them and go on with living our lives. To the OP: Of course this scares you. You are very newly diagnosed and your world has been rocked. Please know that DIB is very, very rare, and to be honest, I've never heard of a single case where the child was wearing a CGM. Do not let this become an overwhelming stressor in your life. Send up a prayer or good thoughts for the affected family, hug your child, and go on about your day.
     
  9. Sarah Maddie's Mom

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    How is the "knowledge" expressed thus far in this thread, not including Meg's links to essays which are not open, public forum conversations, "powerful"? Do you see power here?

    And I suggested "restrictions" not a ban. Like moving them to some other forum or monitoring them more closely.
     
  10. nanhsot

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    I simply mean that acting like it doesn't happen doesn't add to our knowledge base. Not so much that this thread but threads in general on the topic. I just would hate to see people feel like they couldn't bring up the topic.
     
  11. Mish

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    I'd be happy if we could have a conversation about the topic. But it's never brought up until someone dies and then I never feel like it's the right time. Everyone has strong emotions about the topic and when a thread is started specifically linking to a death, than it just feels like the only response should be, "How tragic. I'm so sad for that family." not a discussion about the topic of DIB.

    But, most importantly, a youngster has died. It's really none of our business as to the details surrounding the death. As much as we'd like to know, it's really, really, really none of our business. I can't imagine if the parent of a child who has passed away were reading a thread and felt that their actions were being judged. Even if we're not meaning it to be that way, it's crass. Think about this - a child has died and someone, a total stranger has linked to a story about that child. I can't imagine how that would feel to be that parent.
     
  12. caspi

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    I completely agree. My FB wall has been inundated with posts about this and it makes me very uncomfortable reading the comments some people are making and questions they are asking because (a) We don't know this family and (b) Like you said, it's really none of our business. I often think if I were in those parent's shoes how horrified I would be to know that people were discussing my child at great length without ever having met me or the child. It's nothing more than gossip and as you said, crass....
     
  13. kvnc

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  14. swellman

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    It really, really, really IS our business IF we can learn from it. That's a big if and it totally depends on whether the family decides to share the details. I disagree that that the topic should be moved to the side because it's uncomfortable - which it clearly is.

    I want to know every detail of this situation so I can, maybe, learn from it.

    I'm all out front with this and I'm not sorry that I want to know what and why.
     
    Last edited: May 10, 2014
  15. Sarah Maddie's Mom

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    No one is pretending that this doesn't happen, but it's profoundly indecent to think that ANYone who has lost a child in this fashion would or should provide any details of the event to a bunch of internet strangers.

    If you want to understand DIB then talk to your endo, read the scientific literature but don't imagine that this forum will provide anything beyond the most superficial 3rd, 4th, 5th hand information on what is a private matter.
     
  16. kvnc

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    Well, I wouldn't have even known about it without the publicity from her sister on Twitter asking One Direction to dedicate a song. So, they don't want complete privacy. And of course they have the right to say that the details of the complications are none of our business.
     
  17. Jeff

    Jeff Founder, CWD

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  18. hawkeyegirl

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    That is a good article. Thanks for the link, Jeff.
     
  19. mmgirls

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    Thank you for the article.

    I really just wish that all of our flipping Diabetes management devices weren't all stand alones, wouldn't it be wonderful if we wanted to be able to control them via Wi-Fi we could partner up with other parents across the world that could watch our kids numbers as we peaceful slept.

    Heck I might just pay for that service!!! I patent that idea right now, a service that would call me to alert me to CGM reading or the lack there of. And for those on MDI a "wake-UP" call if I wanted it. I don't know how many times I have just been too tired and slept thru an alarm and raced to the CGM or poke a finger to just be either relieved or pissed that she was that high for that long.

    I think this is of course the worse reality of T1D, that our child can die from either of the extremes. While many people deal with the daily struggles that a disability may bring there are fewer that we are in the same boat with us, the everyday possibility.
     

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