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Does your type 1 feel his low during the night?

Discussion in 'Parents of Children with Type 1' started by ecs1516, Sep 26, 2017.

  1. ecs1516

    ecs1516 Approved members

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    Does your type 1 feel their low while sleeping and wake up? Mine never has. Well, maybe once in 17 years. Someone told me that they(type 1s) always wake from lows or their BG comes up on their own. They also mentioned dying from lows never happens. I think if it does happen it would be a rare thing. I believe it can happen though.
    We currently use CGMs so we actually don't worry about this any more. Just wanted your thoughts.
     
  2. Christopher

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    No, my daughter does not feel her lows when she is sleeping. Whoever this "someone" is who told you those things is incredibly wrong. Just so you know, whenever someone makes blanket statements or sweeping generalizations about people with type 1 (or any people for that matter) they are almost always wrong. I am sure some people with Type 1 do wake up from their lows. And maybe some come up on their own. As for dying from lows never happening, sadly, that is not the case. It is probably rare, but it does happen.

    I really hope this "someone" you are referring to is not a caregiver for a person with Type 1.
     
    Last edited: Sep 27, 2017
  3. StacyMM

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    My daughter has never woken from a low. My son, however, has. Not every time, and not 50s or 60s, but he's woken up multiple times in the 40s...often before the CGM catches how low he really is. Nothing I would ever count on, but if walks in our room and says, "I think I'm low..." he is right.
     
  4. MomofSweetOne

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    Whoever gave you that advice needs to read this article: https://www.diabeteshealth.com/beware-the-perils-of-severe-hypoglycemia/

    My daughter has only woken twice with lows in over seven years. Both times her heart started beating irregularly and woke her, the low causing the irregular heartbeat which is also dangerous. Both were during a sensor start-up, I think. I love cgm and Share. We did a year without, and we'd never want to go back.

    Edited to add: I don't know where I heard or read this, but it is my understanding that the longer lows last, the most dangerous they become, that a prolonged low at a higher number can be more dangerous than a quick much lower low that gets addressed.

    I caught a 32 my daughter was sleeping through during a sensor start (perfect storm of pod failure & sensor failure together, and I'd forgotten to account for the iob for the shot she'd given by syringe to cover until she got home to a new pod). When we told our endo about it, she gasped and said, "That's coma range." When I'd exclaimed at the meter number and tried turning the insulin off, my daughter opened her eyes and instructed me to FEED her, not mess with the pump. She definitely wasn't comatose!:pirate:
     
    Last edited: Sep 26, 2017
  5. Snowflake

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    On the question of waking to lows, this is my daughter's story also. She sleeps through a lot of them, including two times when she was much younger when she got into the mid-20s. However, every once in a blue moon she will wake up and call out, or she will have vocal nightmares, that wake us before the Dexcom does. The Dexcom isn't infallible, and we've caught bgs in the 40s by her waking when the Dex was showing something like 80 and sideways. Again, this has been pretty rare.

    I do wonder if she would wake to her lows more often if we didn't have the Dexcom to catch and treat anything under 70.
     
  6. wilf

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    You can tell your "someone" that they are a jackass for spreading untrue information which could endanger the life of someone with Type 1 D.
     
  7. joshualevy

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    Sometimes yes, sometimes no.

    These two statements are untrue, and the second is dangerous to believe.

    Several years ago, I researched this issue, and wrote on blog on it, which you can read here:
    http://cureresearch4type1diabetes.blogspot.com/2011/12/dead-in-bed-what-is-chance.html
    I include a lot of discussion and references; what studies found what numbers, and so on. But the bottom line is that about 5% of the people with type-1 diabetes, who die under 40 years old, die of low BG "dead in bed". (For people over 40, there is not enough data to even guess at the "dead in bed" rate.) Please read the blog posting for lots of details.

    However, there is no question that some people do die of low BG. (There is just argument over how common or uncommon it is.) Here is a detailed case study:
    https://www.ncbi.nlm.nih.gov/pubmed/19833577


    Joshua Levy
     
  8. ecs1516

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    That is what I worry. A newly diagnosed family reading that. This was in a Facebook diabetes group.
     
  9. ecs1516

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    In answering your question, yes it is a caregiver. I also don't believe this is good information to be put out there. I deleted my question that started the posts on that group. She was being quite
    condescending. In another post she had said they always wake from their lows or the body naturally goes back up. I did not take a pic of that page.

    FullSizeRender-2.jpg FullSizeRender-3.jpg FullSizeRender-4.jpg IMG_0994.jpg IMG_0995.jpg IMG_0996.jpg
     
    Last edited: Sep 29, 2017
  10. MomofSweetOne

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    Wow. Those were quite the posts. What about when the lows are the trigger for a heart arrhythmia?

    I was at a parent session once where an endo opened the floor to questions, and someone asked that same question. The endo became very sad and said, yes, they can die in their sleep. For her, it was a friend.

    And while they may seize and start to come to...or wake someone else, they may be left with complications from the seizure.

    Someone who used to post here frequently was told by her endo team not to test at night. When she started after reading here on CWD, she found her daughter was often in the 40s. Her daughter developed hypoglycemic unawareness quite soon, and she felt the nights of undetected lows contributed to that.

    IMO, every T1D child should come home from the hospital on a cgm at dx, just as premies that could stop breathing do. But, a friend that works for a major diabetes company told me he had doctors' offices tell him the technology was too confusing for patients and they weren't interested in recommending it. :mad:
     
  11. sugarmonkey

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    Phillip was diagnosed almost 13 years ago. He has never woken up to lows. When he was younger I tested him every night, and frequently found him in the 2's (not sure what that is in the US). At least once that I remember he read LO. Every time we went to the specialist they'd ask if he was waking up to his lows yet. They didn't say he would, but seemed to think one day he would.
     
  12. Ali

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    So I think I can give some input into this discussion. I have had T1 for almost 50 years. The lows, the newer insulins and pumps (last 30 years) tend to make the extreme rapid drops or rapid highs happen less often. Plus with the pumps and newer insulins is if you can spot it the slower drop means you have time to correct. I respond more to rapid changes, slow changes are very very hard to detect no matter how long you have had the disease. You do get numb to many of the lows the more you have had. If I have had a few weeks with many lows i often run myself higher to try to readjust my "comfort level". I would never ever assume someone will be aware of a low, while awake or asleep. When asleep, if you are not dropping very, very, quickly and even then you may not be aware of the low, it is the rapid heart rate and sweats that have a chance to alert, but no, no, no guarantee. Even then, to come out of your sleep, take the appropriate treatment is very very hard. What many do not realize is that your brain just does not work at all properly when low, so when I was younger and very low I had to be forced to take treatment, my brain was just not functional. I wear a CGMS and that is what alerts me...day and night. When I see a low I jet eat sugar without question but that took years of practice to have that be an automatic reaction without worry about a high. I have had 4 terrible live threatening lows and too many too count almost crisis lows. My life threatening ones always took the intervention of others to fix...the CGMS for me allows me to save myself.
     

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