Discussion in 'Parents of Teens' started by Michelle'sMom, Jan 30, 2012.
Thank you for sharing this. I would kick my endos butts if they ever suggested there was no need to test at night, or that we could count on DD waking from a low.
If a child is badly low for a prolonged period and doesn't wake, there is a chance that they may be dead the next morning.
This is so irritating.
In the 6 years since dx kaylee has not woke up once from a low! Not.Once!
We didn't kick her butt, but we did fire her. Our current endo knows we test overnight faithfully, & has never commented one way or the other. Day to day management is our call.
I just think it's crazy some of the endos out there are telling parents their kids will wake from hypos. My dd certainly never has.
This really caught my attention:
"only one of the 16 patients with T1DM had spontaneous awakening during hypoglycemia"
I don't like those odds.
Sadly the site is currently undergoing maintenance, but this is exactly what our endo told us repeatedly, that dd would awaken to nocturnal hypoglycemic events, and never once mentioned testing at night. In fact, they sent us home with detailed instructions on what times to test, administer insulin, and have dd eat. When we asked about the potential for overnight lows at our discharge training, at one week, at one month, and again at three months, she reiterated that dd would wake up. It wasn't until I started reading here about all the parents who test at night. I began doing so myself and discovered a consistent pattern of lows in the middle of the night that NEVER woke dd up. Since then we've been discouraged from night testing until our visit in September when the endo saw the clear pattern, and said we should probably test at 2am every night - but just that one time we know. At our last visit in January, the PA we saw made a derogatory sound when I mentioned CWD and told me that I perseverate over numbers far too much and should cut back on testing.
Suffice it to say we are now looking to see someone else at the center, or to switch to an entirely different clinic all together. Dd has never once woken up to a low, and the continued night lows has, I think, contributed to some hypoglycemic awareness in the daytime as well.
Thanks for posting the link. I want to both read it, and to print it out and take it with me when we ask to see a different doctor.
I guess I'm just lucky then, but hypos DO wake me up, and they always have... but what concerned me was this.
"In their studies, however, hypoglycemia was induced before the patients were asleep."
That isn't how hypoglycemia usually works. I don't know that a single parent on here who would let their kid go to bed low... that doesn't make sense at all...
EDIT: okay reading further down, it looks like there was another study, where they made the patients go low during sleep, forget that last statement I guess
Even if you are woken up by some hypos, you can't be sure that you are woken up by ALL hypos. You wouldn't know about the ones which don't wake you up. So maybe they do all wake you up, but maybe they don't. You can't ever know.
Personally, I've woken up hypo before, but I don't think that I actually woke up FROM the hypo (I wake up plenty of time in normal range). That's why I use the CGMS. Even if I tested every 2 hours overnight, I could easily drop a long way between those checks. Your diabetes may vary, of course.
I had a back and forth with our first endo's office, them saying people with diabetes always wake up from lows and me saying that my kid has never woken up from a middle of the night low. On one visit, I finally showed them the small study.
Haven't read the article but find it very interesting how different the info is we get from our medical teams. We were never told that the girls may wake from lows. I actually remember the CDE saying if I wake up, for what appears no reason, to go check them - due to D-mama instincts. We were never told to NOT check at night but also not told to check every night. Our CDE has T1D herself so maybe that changes the advice given a little. I have one daughter that has woken up a couple times and tested in the 60s but I've also found her sleeping in the 60s. So I'll keep checking most nights.
Can someone tell me why anyone would wake up from a low? Selah gets very sleepy with deep lows, so I've never understood why she would wake up when she's already asleep when she goes low.
I imagine an adrenaline burst or a rebound could wake someone, but doesn't that just mean the folks that don't have natural rebounding ability are at even greater risk from endos saying not to check at night?
At our appointment last week with the CDE she wanted to make sure that no one told me I had to do the night checks. They are normally so cautious too, it makes no sense to me. I'm not thrilled with them lately for a variety of reasons though.
I "think" it's a combo of adrenilin and the liver kicking out insulin.
We were sent home with instructions to check every night for the first couple of months. After that, it became we were to if 1) sickness, 2) unusual exercise, 3) exercise after dinner, 4) insulin dose changes, 5) Mom's gut instinct. At the time, I was relieved we didn't have to check every night, as I'd heard another endo nearby required it. What I didn't realize was that insulin doses change all the time, so it would be rare that a night didn't need a check. Fast forward to the pump...I was told to set an alarm every night. Even though we started CGMing at the same time. Now, if I know we have an awesome sensor going, I don't set an alarm, but if it's new, etc., I will. It's been 14 months since I slept through a night....
So if you have an adrenalin burst and the liver kicks out glucose, then the low wasn't hazardous anyway, right? Not healthy, but not the ones we are afraid of. It's when the body doesn't have the glucose burst that the low is dangerous. So wouldn't that mean, by definition, that the dangerous lows are the ones you specifically wouldn't wake up from?
And is it just me, or is it not possible that allowing night lows to be addressed over and over again with liver glucose could in the short term deplete storage and be dangerous for the next low, and in the long run damage the response to a low? The human body was never meant to consistently run low and have an alpha cell response, was it? Is it not possible that one of the variables for how difficult diabetes can be to manage in adulthood could be how many undetected and untreated lows a person has had already?
I'm convinced bad things can happen randomly and often simply can't be avoided, we just do our best. But it seems to me that if I let Selah wake herself up with a rebound from a low several times a month throughout her childhood (she was diagnosed at 17 months, after all) then by the time she's an adult and entering that time when she is living alone her body and pancreas and liver might have had quite a toll taken on them.
The endo tried to assure me that I did not need to do night check either....I think if she had a CWD she would have a different perspective. We're still doing night checks despite dr's advice. 5 months post dx...no nighttime lows.....but lots highs, corrections, and re-checks.
Same here, mostly highs from slow digesting foods etc.
I'm not really sure what I feel when I'm low, but its much different than me just feeling "tired". It feels like an adrenalin rush combined with a strange feeling in my chest that I can't describe. Doctors always look at me all confused when I tell them that... but I can't describe it!
I remember when our clinic used to have...like a newsletter with D related tips and information. I don't know if they do anymore. I don't remember seeing it.
Anyway, there was one that said that parents didn't need to check their type 1 child at night because if they went low their body would protect them by releasing glycogen stores to bring up the low BG. This would cause a rebound high.
This is maybe the worst D advice I have ever heard! I wish I would have posted a link to it here when I read it. I wish I could still find it online, just to make sure I'm not imagining things....No, I'm not crazy...it really did say that.
Interesting read, thanks for posting it.
This subject is probably the #1 reason I love CWD. I love CWD for a lot of things, but this is the biggie.
Our CDE (type 1 herself) told me 2 weeks post dx that night checks were no longer needed - unless sick, unusual activity or dosage change. I had known of a type 1 child that died during the night, but she assured me that had to be due to something else or a case of mismanagement and that so long as I stayed on top of things my son would be fine - and that if he did go low during the night he would wake up. I didn't know any better, so I believed that. And I was relieved to hear that I could go back to sleeping at night after the 2 week mark.
Then I found this forum, and learned about DIB and also how quickly and inexplicably my son's levels could and would swing...day or night...even without illness, activity or dosage changes. So I went back to checking during the night.
A year and a half later, I've now caught enough nighttime lows that Jesus himself could not convince me to stop checking through the night. Bobby has never woken up from a low. Not once. I hate to think what could have happened if I'd not found CWD and gone all this time without checking.
I really wish D care teams would stop spreading that rumor and err on the side of caution instead.
Is it the same as your reaction during the day?
I am wondering if YDMV, if people feel lows differently depending on their particular biochemistry.
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