Question from a newbie parent

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 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?

Panicking... of the things you have on your side is your son’s age. At this age during the night, hormones and testosterone peak. This is why a lot of kids this age have what is called the dawn phenomenan. Which is basically they wake up high because of all the activity that their bodies go through during the night. Now does this mean your son couldn’t go low during the night? Absolutely not. My son is 13 and we do not check in the middle of the night unless his bedtime BG was questionable, if he is sick, if we have had a recent change in his carb ratio, if he was extremely active that day etc. Does your son wear a pump?

My son was diagnosed when he was 12. He will be 14 next week. He has been diabetic for 1 1/2 years. My son loves and I mean loves the pump. A pump gives so much tighter control, eliminates so many shots and really gave him back normalcy that he lost. Unfortuantely with diabetes, you can do everything right and still be scared 24 hours a day. I worry every day. But I know we are doing everything we can to manage and control his diabetes and for now thats all we can do.

My son was diagnosed at age 8, and did not want a pump at all. We waited a year, and by that time - the thought of pushing buttons every time he ate something became much more appealing than 5-6 shots a day. I wouldn't even push it during the honeymoon phase. Your control is easier, and the pump might not have the benefits it does afterwards. Once he is making almost zero insulin - and every snack, and every second helping requires another shot - he might be more interested. My son also refused the tubes of a pump but has been really happy with the Omnipod. It becomes a very personal decision if you do decide to try. The other thing is that if you decide to try a pump most companies will let you trial the pump first so you can decide if it is worth it or not.

My son definitely feels the cannula being inserted (at pod change) but then he doesn't feel it after that except in a few cases. We notice with a big bolus he feels the insulin and sometimes we get close to a nerve so he will notice the cannula slightly throughout the time that pod is on. Mostly we 'stick it and forget it.'

I have 2 T1s, both on Omnipods. We generally check both kids at midnight or 1. My son (8) does go low in the night sometimes. He is asymptomatic to lows even during the day (dx'd 7 years ago) so that is a worry we have. My daughter (10) has been having what we call stubborn lows. She goes low and it takes several hours to get her back into range. This has happened almost every night for the last month. She does sometimes wake up when she feels low, but not always. We have a Dexcom CGM for both kids. They don't wear them all the time because they don't like having something else stuck to them and they don't keep up with Dex very well. Whenever we start having problems highs or low, we put on Dex so we can get a handle on their trends. The Drawback to Dex is that it is not a loud alarm, so it rarely wakes me up from the other room.

So we just hope and pray and do the best we can. Night times can be hard (harder than days I think). We are getting a Diabetic alert Dog to help us especially with nighttimes.

Oh, and both kids love the OmniPod. It sometimes hurts, but less often than getting a shot 6 times a day.

First of all, especially since you are new to this, there are no dumb questions. Besides that it's a good question.

I would say that it does depend on age, and on length of diagnosis.

Age: according to my doctor, young kids' bodies do not wake up from low blood sugar until they are maybe 8 or so (probably depends on the person). My son is 7 and has never woken up while low. I have type 1 also and I always wake up when low. So age makes a difference. A 13 year old would be more likely to wake up. That said, if he's a deep sleeper, it might be harder to wake up. Let him know that if he *ever* wakes up at night, especially after having a bad dream or if he feels hot/sweaty, he should check his blood sugar. (based on my personal experience, those things happen to me; he may have other symptoms that he will figure out).

Honeymoon: if he is only taking a couple units of fast acting insulin and still honeymooning, then you don't have much to worry about. Save your worry for later when he takes a lot of insulin before bed! :) Not that he would never go low now, but it's a lot less likely during a honeymoon, with a lower insulin dose.

You can ask your doctor about this. He could also try a continuous glucose monitor for a few days/nights to see if there is a problem. If it's flat, then your current plans are probably fine. Worst case, get up and check more often.

First, welcome. Second, do not panic. Type 1 diabetes is manageable, some days more so than others and you and your son/family can do this. You also deserve a good night's sleep!
My daughter is 10-1/2, wears an Animas Ping, loves it. Went first year in honeymoon and on shots first 18 months. I SELDOM check her in the night, only if she had a funky bedtime number or is sick, or as another parent said, if I have changed any of her pump settings.
My daughter is a heavy sleeper but has always awoken when low. I keep tabs and sugar packets next to her bed. My advice is to try to not get too wrapped up in other Type 1 horror stories. It's good to be vigilant, but everyone has different experiences. We allow our daughter to go on sleepovers, stay home with babysitter, whatever. But we have met other parents who are terrified to do those things. Listen to your instincts, teach your son to be in good communication with you about his blood sugars, and don't read too much! :)

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I really think it's up to the individual family to figure out what works for them. My son is almost 13 and is coming up on 3 years with diabetes. I check him every night. He has never woken up from a low and I have discovered him sleeping peacefully everywhere from 34 to over 500 with ketones. I do not let horror stories or fear run my life, however, I do keep a very close watch on my child's numbers when he cannot. He stays home alone after school, babysits his younger brother, rides bikes around town and has occasional sleepovers at friend's houses (where he tests and texts me very late at night and very early in the morning). I definitely encourage you not to panic, but make your own informed choices depending on what you're comfortable with.

We all need each other. Glad we are able to offer support.

I say better safe than sorry. My son has been D for 3 years and we still check around 2 to 3 am. All it takes to convince me is to read the posts about death in bed. I always sleep better after checking or else I will lay there and wonder. He is rarely seriously low in the night but sometimes somewhat low and doesn't notice he is 10 years old and wears an Animas ping pump.

Me too, MsShelly!! I can be overboard though checking multiple times a lot of nights. I just can't stand the thought of her being low and usually when I check her multiple times it's because she was high and then I lay there thinking "is the correction working?" so I might as well get up and check. I think a cgm would really help but she's only 6 and I need what little "chunk" she has for her pump sites. Holding out for the "non"invasive cgm........

My little one has a cgms; we've put it in his arm (back of upper arm) or upper thigh. His pump is in his butt. We've done this from age 2 till 7. He's skinny, but it works. It is *so* helpful at night. Without the cgms/when it's not working, I get up at night. Otherwise, I sleep.

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!

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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 am in Medicine Hat and we have a clinic here that we attend but our peds endo is from Calgary. He comes to us 4x a yr so we don’t have to travel to Calgary. Although we will only see him yearly unless we have major problems. I have a brother and his family living in Sherwood Park and a sister in Edmonton!

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.