My son has had diabetes for just over 2 yrs. He is 11 and has been using the omnipod for just over a year. My main question though is how do moms and dads out there manage their child’s nighttime blood glucose so that they don’t go into a seizure or go too high? We are making sure he is over 175 before bed with the balance of carbs, protein and fats. He has had 2 seizures in the 2 yrs. (both occurred at 5:30 am, about 10 months apart) and we realized what we did wrong for both of those. Other times he goes low for no explainable reason. I was at one time getting up 3 times per night (after the first seizure, for over a year)
to make sure he didn’t go too low because the first seizure scared me so much. When our endo dr. realized how sleep deprived I was, she convinced me to only check once (now at 2am). I am curious what other parents do with this in mind. I also want to give him freedom to go to overnighters with friends or cousins (is that even possible???) and he eventually needs to manage this himself. Please help… any ideas or thoughts are greatly appreciated! Sandy
Have you heard of “Dexcom Glucose Monitoring System”? It’s a device worn which monitors BG 24/7. It gives off an alarm when BG goes to a set high or low so you can catch it in time to prevent seizures, etc. Check it out on the internet and/or ask your doctor about it. This way your son can go on his overnighters and not worry because the alarm will wake him in plenty of time for him to fix the problem. Good luck.
Wow!!! Very scary!!! I don’t check every night, probably more often than not. !t just depends on what his bedtime blood sugar is and we we have for a snack. Icecream is one of our reg. snack or if he wants something with more carbs than protein then I make him eat a string cheese. I check anywhere between 2-4. If Will gets low its usually around 5am as well. His basal rate is a little higher from 4-8. If I check him around 2-3 and he’s low hundreds I usually cut his basal down by 50%. If he’s less than 100 I usually turn him off for an hour or two. If he’s really low 50-70 we get up and eat and don’t cover anything, turn him off for a bit and recheck. If I happen to wake up I’ll usually check him regardless of the bedtime bloodsugar since I’m up anyway. My son is 6 and has spent the night with my nephews and I make my sister check him in the night and call me or text me. I don’t care if it’s 2 in the morning. She’s glad to do it because she doesn’t want badness on her watch. I try not to stress when he’s not with me, but I do. For a while I was checking later in the morning 430-5 because that’s when he’d tend to be lower, but if I checked earlier then maybe I could turn him down or off for awhile and prevent the low all together. I’ve decided I will never sleep through the night consistantly again. But we do what we have to do.
This is a huge issue in our house, too. My son had a seizure during his nap when he was 2, so I also carry this fear. (he was diagnosed at one). He will sometimes drop between 50 and 100 points between 2 & 6 am. But then, sometimes he stays solid all night, and other times he will rise. I have tried to look at all factors, and I really can’t come up with why sometimes he drops, and sometimes he rises. (different sites? activity level morning vs. afternoon vs. right before bed? high fat meal? low fat meal? feeling sick? is actually sick?) So, I always keep him above 150 at night. Of course, then I have to watch that he doesn’t get super high. He does much better on the pump than he did on Lantus, but I still check him every night, at least once. Usually around 1 or 2 am. If he’s above 150, I don’t check again. If he’s below, I will lower his basal. If he’s below 120, I will wake him and give him some juice or lower basal and check again in an hour. Yep, not much sleep in this household either!!! As for sleepovers, I agree that the visiting household would have to agree with doing a blood sugar check in the middle of the night. Unfortunately, I don’t have anyone willing to do that for us, but hopefully someday… I’m sorry I don’t have any suggestions, I just wanted you to know you are not alone. I have considered getting a Diabetic Dog Alert for when my son gets older - some peace of mind for sleepovers and for when he goes to college! I am not interested in the CGM, these little bodies only have so much room to be poked. Being a parent of a diabetic is so much harder than anyone can understand - except for us that are actually living it! Deep breath, and one day at a time.
Well, thank you both for responding!! I did feel like I was alone and over reacting but it sounds like we are all living with the same fear. I have thought about the diabetic dog, but that’s unreasonably expensive and time consuming. John is also not big on having a pet. The CGM is our only other option and hopefully we can do that soon… John is open to it as well and I think he knows he will feel safer with it. SO, I will think of you when I am up at 2 am tonight! I can’t sleep past that time now anyway.
My son is 10, has had diabetes for 2 and a half years, worn the omnipod for 1 and a half years, and the Dexcom almost a year. I have come to depend so much on the Dexcom and I highly recommend it. We check it before we go to bed (usually around midnight) and make sure he’s around 130. If he’s lower we usually reduce his basal temporarily (after double checking his reading with a finger stick).
We then have the receiver for the Dexcom next to a baby monitor that is right by my head so I hear it alarm if his blood sugar goes below 80. We had to fight to get insurance coverage for it, but you should have an easier time I would think - having already experienced seizures.
My son has gone on multiple sleepovers - we do a lot of teaching of other parents, and he calls us with numbers (if we don’t hear from him, we call him) The alarm on the Dexcom doesn’t wake my son up - so sometimes a parent makes sure to be in the same room with the kids and I tell them about the alarm. An idea I’ve heard but never used, is to put the receiver in something loud (a jar of coins, or something) because it vibrates as well. We usually make sure he’s pretty high at a sleepover by reducing his basal anyway (there’s the combo of being more active for longer at a sleepover, but they also seem to eat a lot more junk to balance that out as well) So far we’ve only said no to one sleepover party - but that was because there were 40 kids invited, a bonfire and a swimming pool - I hung out at the party until around 11:00 but then brought him home.
I never had a little one with diabetes - but for the future, for us the CGM is one stick every 2 weeks (he wears the sensor for 2 weeks at a time usually - almost always at least 10 days) and since we use EMLA cream before the insertion it’s not as painful as the pump insertion, so he doesn’t really even notice it. It’s on his lower back, where he never wears his pump anyway, and it doesn’t cause the same issues as pumps as far as scar tissue from what I understand.
Thank you… that sure sounds like a good answer to releiving some of the stress with not going too low or too high. John has been to sleepovers, but I do the same thing… get him around 11pm to come home. He has learned to eat food in his sleep, but I might try to just reduce the basal input like several of you have mentioned. I have been concerned about his highs and the effect that can have long term on his overall health. Thank you again… I truly appreciate all the input!
Sorry you’ve dealt with 2 seizures. As others have said, the Dexcom is a wonderful tool. I’m very surprised your endo didn’t mention this already - it may be a sign that she is not cgms friendly. If it comes down to it, I would switch docs if mine wouldn’t support cgms. She should support any technology that makes it easier to live with T1.
I figure for sleep-overs, a high here or there won’t do much damage. At home however, I feel the same as you. I’m always correcting highs at midnight and then stressed about the result hours later!
I can’t imagine living without a CGM now, and would recommend the Dexcom to anyone with diabetes, especially children. They really are very small on the body and with any luck at all, you can get 2 full weeks out of one sensor. It is not at all painful for most, and the peace of mind for the parents is absolutely life changing. My kids are adults, but I would do anything to make sure that they are never without this technology. There is no need to run high in order to be safe overnight, and anything that can prevent seizures is something worth doing. By being able to keep their bg’s more level day and night, overall control will improve. You will be able to tweak the basal rates and have less alarms once you can see what it really happening, especially at night. It is seriously like you have been fumbling around in the dark and someone finally turns on the light for you! We had no idea how many lows our daughter was sleeping though at night.
I do not have a diabetic child, I am the diabetic. I am a fan of CGM (I use Dexcom) and if I had a diabetic child, I would get my child on CGM. It is very unintrusive and has saved me from lows many times. It also removes my wife’s concerns that I will wake up in the morning. One night before I had CGM I was fine before I went to bed around midnight. I woke up the next morning with two police officers and four EMTs in my bedroom with a glucose drip in my hand. My wife couldn’t wake me up and called 911. Since I have had CGM I have not had any lows that required medical attention.
A tip, I find that the skin that Dexcom supplies reduces the volume of the alarms. I have slept through a few and when I finally heard one, I was lower than I would have been if I had heard the first alarm. I should probably take the skin off at bedtime so the alarms are louder.
I have read that the Dexcom system did not go through trials for children so it is considered “off label” use. As you have read on this thread, there are children using the Dexcom system successfully. However, because it is “off label”, you may still have a battle with your insurance provider.
Thank you very much for your helpful insight. I am looking into Dexcom this week and we will ask the dr. about it on his visit next week…good timing! I think we are convinced!
That’s wonderful. I currently don’t use it but my lows are getting harder and harder to feel so I think at my next Dr’s. appt. it will be discussed. Last night I was very tired and I think I miscalcuated my carb count and I received too much insulin. For a while there my BG kept dropping even though I drank 2 glasses of juice and ate crackers. It bottomed out at 50, then started to rise. I was afraid to go to sleep so I stayed awake and tested myself every 2 hrs. throughout the night. It didn’t help that I had to go to work this morning so I stop at Dunkin Doughnuts to get my cup of coffee which I paid for and walked out with a napkin in my hand and drove away. lol I stopped for gas up the road and reached for my coffee that wasn’t there so I went back and felt like a total idiot. Needless to say, many more mindless things happened at work today. All I had to do was type my name and password to get on my computer and I ended up sitting there a good 5 minutes before they popped into my head… wow… that’s scarey!! 
If you are really interested, I would suggest getting the ball rolling by calling Dexcom. They will send the paperwork to your doc to sign. That is how I did it both for the Navigator and the Dexcom. You sure would get more sleep. Last night I heard my daughter’s go off. She was over 160, so did a correction and woke up at a nice bg. The night before she was awakened with a low. I will download the Dex and take a look to see if there is anything that I need to tweak. For her, that is pretty constant and the Dex helps me to see patterns.