At this point our 6yr old daughter is not wearing her cgm. It was causing more harm than good. It would falsy read her bg as low (when it was actually normal or high), activate the threshold suspend feature, and she would wake up with large ketones. Had similar problems with not having it read lows and continuing invasion delivery until she was in the 20s.
The point is, waking up throughout the night to do manual blood checks is slowly ruining our health too. At this point we have her on a matress next to our bed so as not to have to wake up so fully as to walk to another room.
Is this just a fact that we will be living with forever? Am I just feeling the craziness of it because I had I hopes pinned on the cgm for almost a year?
We are doing a trial dexcom but I’m not sure where she is supposed to put the remote while she is already wearing the pump and sensor!?
I feel for you and understand the frustration; and I hate to tell you this but with trying to keep her “closely controlled” the nighttime checks may never go away.
Something possible for you in monitoring: I understand that the Dexcom output can be read on an iPhone so she would not be needing to have the monitor with her at all times, and you would not need to be right by her side. I don’t use CGM [I’ve gone almost 60 years without that] but since an incident 18 months ago I do get up every morning about 3 AM and walk to the kitchen to test.
There is a CGM group here on TypeOneNation where you may be able to get more information about remote monitoring of your child’s BG levels.
We’ve used the enlite for a year (garbage) but with the dexcom, you do have to keep the receiver close to the body. The results can also be sent from reciever to a cell but it doesn’t keep the t1 person from having to keep the receiver, sensor and pump all on body at once.
CGM sensors “are what they are”. I would never trust the face value of any manufacturer’s CGM blood sugar reading, I find more information on the trend, IE, dropping, rising, or flat than the actual number a CGM spits out.
I (and many other t1’s) was diagnosed when there were no home blood sugar meters, and no such thing as a CGM and so no one ever “checked” at night (there was nothing to check!), and I lived. How did we do it? we ate peanut butter (or insert favorite fatty/protein here) on crackers at bedtime.
The idea? It provided a slowly absorbed carbohydrate, and with a little practice, your blood sugar can stay pretty good all night at least as confidently as no snack and getting up at night to check with a meter.
I hear your frustration and I am sorry you are having a tough time. There are other ways to deal with this and the CGM will just not be what I hear you need it to be for another generation, at least. Sometimes a good d plan is simple. my advice: Work with the CDE, relax overnight basal rates if necessary, add a long acting carb and get some sleep. Please, you will need it, 6 year olds are a lot of work!
I agree that the CGM is most helpful for the trends, etc. The Dexcom makes a world of difference for us in that regard and it is usually no more than 20 points difference from the meter. However, night checks don’t really end unfortunately. Just the finger pricks for the most part. We still check the Dex at least once at night. It is easier to fall back to sleep without doing a finger prick. If the Dex alarm goes off for a low or high we follow up with a finger prick because it has been known to be inaccurate occasionally and we don’t give insulin based on a high Dex reading. Also, it has alerted us to a “low” when he was really just sleeping wrong on the sensor. Frustrating. Tiring. But, the Dex has made things much, much easier and it has “saved” us from some scary lows that we may have not caught otherwise. You can never predict how an active night of exercise will affect a child 6 hours later. And, if a meal at dinnertime makes him go high we are alerted to that as well so we can treat before ketones start forming overnight. We don’t use a pump yet as we wanted to decrease the number of “things” on our 6 year old’s body. We felt the CGM was more important right now than the pump. He doesn’t mind MDI at all!
Hope you can get a Dex and maybe someone to do “night watch” occasionally so you can get a full night’s rest.
I agree with what Joe said. Also think about your child’s activity level for that day. When my son has been very active or has an activity such as running the mile in PE class, that’s when we check his BG during the night. Other wise we check his BG right before we go to bed then right away in the morning. It’s too tiring to wake up every night. We are going on 6 years with diabetes, you need your sleep too. Any time he wakes up during the night we check his BG. Many times that’s why he’s waking up, because it’s low. My son has never had a CGM our doctor wanted to wait till the technology got better. Now that it is better we are waiting for the Animus Vibe to be approved for children. Our son who’s now 13 doesn’t want to carry one more thing. So we wait for the FDA. We have gotten along without the CGM for 6 years, but it does sound like another handy tool.
I totally understand what you are going through. My son Logan is 12 now, and was diagnosed when he was 6. I frequently set my alarm for 3:00am and get up to check him. He also sleeps in my room to make it easier. I never had a cgm so I don’t know too much about them. I leave his sugar somewhat high for the overnight, I don’t correct at bedtime. He drops too easily. The other night, I checked him at 10:30pm, it was 317. I left it alone. Good thing. 7:30am he was 74! It is so scary, he’s woken up a few times in the night feeling low. When he has a lot of activity during the day, I give him 15 carbs no insulin for a bedtime snack, usually ice cream, and he has to be above 140 before I go to sleep or he will eat a snack.
I have to agree with Joe. A lot of what I’m seeing with CGMs is false alarms. I was reading an article at the Endo’s office yesterday talking about best places for the CGM for the most accurate readings and that was the tummy and top of the booty. My son still has a big rule when it comes to pumps and CGMs - nothing attached to the body. So all I’m doing is reading and staying current to be ready if he does change his mind.
What we have discovered - is just what Joe said, a few grams of carbs that contain protein. Our favorites depend on the BG number at bedtime with lower number needing a higher bit of carbs & protein. But here is a short list; tablespoon of peanut butter or almond butter, 1/4 cup Chobani vanilla yogurt with a little honey, 15 carbs juice with a mini babybel cheese round or string cheese, 4 or 8 ounces whole milk. The big deal is the carb to raise the sugar and the protein to hold it through the night.
We also curb physical activity after supper. Physical activity creates a “burn” that can last for hours. We switch to reading, TV, board games, puzzles… Keep it calm. A recent discovery was how some video games can cause a spike and crash (he went from 180 to 130 in 30 minutes). Don’t want that crash still happening at bedtime so those games are for daytime now.
I still do 2 AM checks unless everything has been going really well and he is staying on the upper end of range. BUT, I don’t do a BG test. I nudge him. I also learned the cold and clammy skin means low (that’s how the expensive Sentry armband works). So it is a simple touch check and a nudge. I now wake at 2AM with no alarm each night, but I did find the FitBit alarm was a lot less stress on me than a loud sound or the bright light from the phone.
I feel like that in a year carpeted path I walk each night will need to be replaced thanks to T1D.
“Now that it is better we are waiting for the Animus Vibe to be approved for children. Our son who’s now 13 doesn’t want to carry one more thing. So we wait for the FDA.”
If you want the Vibe for your child now you can get it easily. We have one on the way, but will probably shelve it until my son is ready for one more piece of tech on the body. We’re getting it because we hit the max out of pocket for our insurance this year (already) and its 100% covered. No FDA approval necessary…just ask your child’s endo to write him a prescription for it. Its considered “off-label” but that’s only until Animas pays all extra money to have the official FDA approval…it has nothing to do with safety or usability for a child. We will do the CDE class for the Vibe and is is fully integrated with the Dex…meaning if he has the pump on it also acts as the receiver for the Dex.
I’m just unsure of having a tubed pump on a rough,tumble 6 year old boy. Really unsure if it will work for us at all.
just thinking of you @motherphillips, one more thing crossed my mind.
service dogs can be trained to alert you in the event of a low blood sugar. I know, the idea is “out there” but I have read that these animals can and do the thing that you are looking for: grant piece of mind and no extra (limited faulty) tech. haven’t heard from you and hope you got a nap in today! =)
I cannot recommend enough the Dexcom G5. We did not like the Enlite that came with the Medtronic pump. The Dexcom has changed our lives in less than 3 days. We just switched. It’s accuracy is incredible. At night it alarms my phone. The Dexcom and Bluetooth phone can be 20 feet away from her and it still sends to my phone via wifi or 3G data. No more finger sticks at night unless there is an alarm. I just roll over at 2:30 am and check my phone. I will check my phone more often if she’s been active but the phone alarms me if she’s trending low or high so I am worrying less at night. Truly a life changer.
Do what you need to do for your own piece of mind, but our endo never told us we needed to do nightly checks, and so we don’t.
No CGM, no pump, just 4 BG checks per day and 2 shots of insulin, one at breakfast and one at dinner. It’s old-school, and I readily concede that she’s still honeymooning, which helps tremendously, but it’s working well for now.
If she ever does wake up at night, we check and treat accordingly, but if she doesn’t wake up (and mostly she doesn’t), then we all get our sleep.
See the thread on lows overnight for more on what seems to be a safe BG before bed, or in the wee hours.