Please forgive my lack of knowledge - if my question seems dumb, I apologize but I'm still trying to figure this out after only three months of dealing with my son's T1.
In reading an article about a night time monitor that works with pumps to alert parents to overnight lows, there were some scary info and stats cited, specifically:
"... most parents of little type 1s get up several times a night (or at least once at 3am!) to check their children’s blood sugar. Every night. Night after night. Week after week. Month after month. Year after year. For years. Why? Because nocturnal hypoglycemia is a real, persistent, common, and dangerous threat to type 1 kids. Which means the worst time for the parent of a little type 1 is when the sun sets and all the mythical fears of the night become very real.
In a study published in The Journal of Pediatrics, Dr. Màrta Beregszàszi and her colleagues estimated the prevalence of nocturnal hypoglycemia in type 1 children and adolescents is a whopping 47%; and nearly half the incidents were asymptomatic—meaning the children felt no symptoms of the low. Another study by Dr. Alexandra Ahmet places the prevalence as high as 68% and notes that 75% of all severe hypos in kids occur at night. And if that doesn’t chill your blood, consider Dr. Francine Kaufman’s 167-night CGM study of young boys that found in a full 27% of the nights, the boys dropped below 40 mg/dL in their sleep, and that the length of time they spent low was longer than previously believed."
OK, I will say that when my 13 year old son goes to bed and his readings are less than, say, 4.9, I do test him at about 1:30 or 2 a.m. But most nights, when his numbers are in the 5's or 6's, I leave him be and we've not had any trouble so far (that I know of, I guess...his morning numbers are always in the 5's for the most part). How worried should I be? He is (and always has been) an extremely deep sleeper, and I would be willing to wager that he'd not wake up from a low if it happened.
Anyone else out there with a child of similar age...do you check every night, regardless of bedtime test results? Does age have any relevance here? How confident should I be when I go to sleep at night that my son is going to be okay?
I think things can vary a lot from person to person and by age and through different stages post diagnosis. I remember Caleb's endo saying "you will know when you can stop checking at night" and I've been working toward that for the last 5 years and still haven't gotten there! I still check at least once a night. I just find that things vary too much for me not to and starting the day with an in-range blood sugar really sets the tone for how the rest of the day goes for us. What and how much Caleb eats for dinner can impact his bg for hours afterward. His level of activity during the day also impacts his overnight bgs. I also think pumping and injection therapy are different (I haven't read every comment but I think this has already been referenced).
Others have said this and I agree - there are no stupid questions. Ask away. That's what this community is for. Thanks for the comment on the blog the other day too. :)
Hi laura, good question, we rarely check jacob at night usually only if he is up to pee ( he would be high then!) he has never woken with low bs or been sig. low in the morning i try to set him up with an appropriate bolus and snack with some fat or protein to keep him going, jacob hates it when i test him at night and i try to respect his wishes on that one and only test if i have a valid reason. ( of course i go in and peek at him when i wake during the night to make sure he is comfortable!) at 13 he is seeing some of the dawn phenomenon and has needed an increase in his basal because he was running higher in the am, the bedtime bs and bolus have a big clue as to what will happen during the night a higher bs and a too high bolus can lead him to a lower morning our best bet if his bedtime snack check is 120-150 but of course that is not always possible! so many variables.. but after 3 years we dont fear night time hypos to much but if he is low at bedtime snack we always check again right before bed. and quinn is probably not ready at all for a pump yet, no rush because it is sort of like starting over again it is good to feel really comfortable with everything else before moving to a pump,we waited until jacob was ready 2 1/4 years in. best of luck and ask away. amy
I have the same worries, and loved reading all of the comments! We are nine months in, and have very little "feel" for how night time lows work. I would like to say that while your guy is in the honeymoon period, I don't think you need to worry. The lows happen from too much insulin, right? Our worst lows happen when we scootch up our son's doses the tiniest smidge. That's when we check at 12AM, 3AM, 5AM. Once he has had the same doses for a few days and has had nice #s at 12/3/5AM, then we just check him at his bed time, then again right before we go to sleep ourselves, and then not again until morning. Am I still not getting it? I wanted to say something nice and warm and supportive, but maybe instead am just being an imbecile.
You will be fine!
My daughter is 3, dx 6 months ago. I just recently stopped checking her twice a night (1am and 5am) and backed off to once around 2-3am depending in bed number. I would say that at least twice a week I find her on the low end of normal and recheck her a second time. On those nights, I would say that at least 50% of the time I have to give her a few spoonfulls of yogurt to make it until breakfast. In the beginning, a number of her lows would be in the night. Now, she hasn't gone low in the night for probably 3 months, but I have "caught" it a bunch of times and fed her before it gets there. I have learned her patterns, that she usually coasts until around 3-4 then drops off steady until morning. I agree with others that if you end up lying in bed not sleeping and worrying, its better to just check so you can go back to sleep. She was spiking at midnight, so we added Lantus, but even at 1/2u she was 4.1 (73) too many mornings for my comfort, so we stopped it again (she may still be honeymooning?). Now I have just lowered her CHO at bedtime a bit and she usually stays in range or she doesn't go higher than 13-14 (234-252). Her normal range for age is 6-12 (110-210). Lord knows when I will ever feel comfortable not checking in the night. I do hope the day comes (or night, I guess) I like sleep, if I remember correctly ;)
She takes 1 1/2units of Lispro (Humalog) and 8 1/2u Humulin N at breakfast, and then 1/2u Lispro at supper (unless she's high, then 1u.
Nothing thru the night.
Where do you live Laura? We are in Alberta, about 3 hrs south of Calgary.
I'm so glad I found your post because my son who is 12 and was just diagnosed with Type 1 a month ago. I get up every night at 2am to check his sugar no matter what his numbers say at bedtime because it's so new to me and I can't sleep if I don't check. My son is still struggling with lows every day during the day but seems to feel it coming on and is good about checking. The part that scares me is what if he doesn't feel it at night? I would just feel better checking every night and knowing me I'll be doing it until he moves out :) I'm so glad I found this website (this is actually my first post, because I've learned so much already just reading everyone elses comments! My son is also not on the pump (yet) and he says he never wants to be but everything is still so new.
Definitely for safety's sake, I'd rather deal with the lack of sleep and know he's OK. I've only had two lows at night when I've gotten up to test him at 2am and we've had to get up and treat him. Mostly his lows are during the day at school always at the same time in the morning around 10:30am. We had a follow up appt at the hospital this week and ended up lowering his Novorapid in the morning (his NPH stayed the same) so we'll see how it goes. So far the last three days he's been low twice a day. So frustrating :( We've also made a few other changes so we will see how it goes. I'm still new to all this so not comfortable just adjusting the dosages on my own yet. I'm sure it gets easier but my son swears he never wants to wear the pump.
The honeymooning stage is killing me :(
I do have a great diabetes team and when we changed his dosages last week I thought it would help but now he's having more lows at night and still around the 10am mark. I talked to one of the members of our diabetes team today and we changed it again. He will be taking Novarapid: 7 units (down from 8), NHP: 23 units in the morning and then at dinner has 6 units of Novarapid. At bedtime/snacktime he is having 12 units of the NPH (down from 13). I still don't think he's getting enough carbs. He is supposed to have 45 (breakfast), 60 (lunch & dinner) and only 15 for morning, afternoon and evening snacks. I had increased the morning carbs and was giving him an extra 15 grams because we get up at 6am and I was giving him the extra 15g around 8am. I don't know it seems to be so much trial and error due to the honeymooning stage at this point. I'm so exhausted though and don't know how to keep going like this and still function normally while working full time. I'm a single mom and Ty's dad has been involved while he was in the hospital and at all the follow-up appts but is too scared to have him overnight and leaves it all up to me. I am just hoping it eventually gets easier....I would LOVE to have 1 day with no lows :) If the doses that they just changed Ty to don't work I may increase his carbs similar to what you mentioned above and see how it goes for a couple of days :) The other thing is Ty really feels his LOWS at around the 4.5 mark and starts to shake really bad. I'm guessing that it's different for everyone?
I'm in Abbotsford, BC, whereabouts are you (secretly hoping you are close by) :) I spoke with our team yesterday and they decreased two of his doses so we will see how that goes. Last night he was close to being low (4.2) but not below 4 which he had been the last few nights. I figured they would have had me lower it more due to all the lows but they didn't. I figured I would see how it goes over the next few days and then if it's close to the same I'll talk to them about it again. I would much rather lower the insulin then start feeding him more carbs. It always seems like so much food already. It's so helpful to hear from another parent that is going through the same :)
The honeymoon state will kill you, and the time immediate after diagnosis will kill you, but it WILL get better. Every day gets a little bit better. I tell people all the time we spent the first little while surviving, and then you move to adapting. NPH though? Lantus is very smooth and forgiving, although I have no idea what you can get in Canada ... it was very useful for me to read "Think Like a Pancreas" - I adopted a lot of stuff for Jack from there. So sorry you can't get the Dexcom, it helps deciphers diabetes in you particular kid. Good luck, we are here for you.
There is what the doctors and the stats say, and then there is what your kid actually does. Jack was diagnosed at 1 and is just turning 3. We run him higher, and he does feel lows, but only when he is sub 40 or when dropping fast. He has dropped fast and dived low during the night and he *has* woken up. I was with an adult type 1 diabetic for 10 years who always woke up with lows as well. My ped endo said that it is their experience that kids will wake up with a low, but no one wants to take that chance - especially in a kid who can't talk or express himself. We use the Dexcom CGM and when he hits 100 in the middle of the night we turn off the basal on his Omnipod for 30-60 minutes. Unfortunately, only experience with your kids diabetes through nightime BG's or a CGM will let you know what's going on with them. Plus honeymoon and post-honeymoon were two very different modes of operation for us.
Let me know if you want to see photos of Jack with his pump and CGM when he was a baby - it's helped some kids in our area get used to the idea more - although some say "well he didn't have a choice!"