Because our adult daughter has an intellectual disability plus type one diabetes, I am basically the “brains” behind almost everything we do with her T1D. “Brains” might be the wrong word since I think that what I’m doing is completely off the mark at times! Tweaking the settings and carb counting have been a challenge.
By the way, she is using the Tandem pump with Control IQ and the Dexcom G6 CGM.
I’m just wondering…. For those of you with T1D yourselves but also parents of kids with T1D….How often do you look at the CGM’s BG or Share app numbers during the day?
We used to have pretty good control (average 85% in range) but now it’s down to 75% due to a new medication our daughter has to take for another condition she’s developed. I’ve had to do a lot of tweaking and I’m not sure I’m doing things correctly. We see her Endo tomorrow and I’m eager for a lot of help with this.
But I am wondering how often you guys tend to look at your CGM numbers during the day? I’ve become somewhat obsessive lately and find myself looking at my Share app at least once every 20 minutes! It’s difficult for me to resist especially because our daughters TIR had been pretty good before and they’re not as good as they were.
I don’t have children, but I know of a hack that I use to get my numbers on my smartwatch, and it might be a bit complicated, but I imagine there are people here that can help you get set up with other systems. It’s not entirely new - I’ve had my numbers via a smartwatch for years - but I love having my numbers visible on my smartwatch, and definitely keep me in range.
In a thread, we discussed how to get to see our GCM numbers on our smartwatches running Wear OS 3. Dexcom hasn’t updated its app, but there is a way to use one app that can get the numbers from Dexcom and another app that allows those numbers to be displayed in watch complications (small inner dials). You would subscribe to your child’s Dexcom account in one app, then use another app to get that onto the phone, and that would also allow you to see the numbers on the watch face.
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I use my Apple Watch to get the data through sugarmate.
It works pretty goo, but sometimes has a delay. When I look at my watch it has my blood sugar in the lower right with a trend arrow.
When I was young we didn’t have cgm. My parents and friends would often be anxious about my blood sugar.
What you can do to wean yourself off checking compulsively is to set the alarms tighter, so that if she goes over 160 or under 80, you will get an alarm and so if you are not hearing alarms, you know she is ok. And don’t need to look at it.
When I got my first cgm, the original 3 day sensor from dexcom, I was obsessed and I was making micro corrections, and it was keeping me up at night.
The nice thing about having a tandem pump is that it will eventually correct her back into range all on its own,sometimes it takes some time, but she’s not going to be wildly out of range as long as it working properly
I rely on alerts set at levels where I want to take action.
I use an android phone with xDrip which has variety of features for alarms and snooze options…
I also have Fitbit watch that gets dexcom data (from xDrip) and can vibrate for alerts.
Not sure if similar setup will work for follower.
In many ways it’s much harder to be the parent of a very young or impaired PWT1 because it’s so hard to know what the limits are. It’s not your body, but you’re responsible, and this can draw you into obsessing over every bump and drop and feeling like you need to flatten everything out for them. Which is impossible, and not really the job.
I think the difference between unhealthy and healthy obsession with this stuff is whether you’re continually getting your chain yanked and feeling like you need to “Fix this NOW!” versus getting educated as to overall patterns and training your expectations. Others have mentioned Sugarmate which gives you lots of options for having your CGM track available at a glance. Might sound even more obsessive, but actually I find that this helps to just make it part of my general situational awareness and hone my sense of which things I need to react to and which I don’t. I have it in the control bar of my MacBook—
—and I also have it in the form of the Glance watch face on my Fitbit Versa 2. This makes it feel more like just part of my general situational awareness. “What time is it? Do I have an appointment coming up? What’s my BG?” I particularly like that it gives me the ± since my last interval. A couple of points either way, NBD, but if I see a big jump I’ll start paying more focused attention. I actually prefer it to the native Dexcom app in that respect.
Re your endo appointment, I’ve just started on a Tandem CIQ pump and am impressed with how many tools it puts into my hands for customizing for regular patterns and avoiding or controlling excursions. And don’t forget you also have the t:connect and Clarity reports, which should help you and your Dr identify regular patterns and figure out what adjustments you need to make for the new medication. Best of luck, and let us know how your appointment goes!
This is so tricky and complicated!
I look at my CGM on my watch a few times per hour. I have a lot going in my brain - my activity level, how much sugar is going through my system, when I last bolused, etc - and so that all together takes up quite a bit of brain space (especially if I’m not feeling well or doing well, number-wise).
I also know how I’m FEELING, which is a piece you don’t have. If I were in your shoes (and I am not a parent, so I don’t know that side of it), I’d probably check at least once per hour, depending on what she is doing. Overnight I don’t check at all really since I know ControlIQ keeps my numbers in great check.
Looking every twenty minutes doesn’t seem excessive to me. That said, if you are unable to be absorbed by other activities that could be a problem. Timothy’s suggestion to set your alarms so that no alarm =no problem seems helpful to me in that circumstance.
The primary thing I want to say, though, is that between you and your daughter, you’re doing an extraordinary job. While 75% represents a decline for you, it’s still the kind of control that minimizes the risk of diabetic complications for your daughter.
The change in season, warmer weather, etc can also impact control, if activity increases, more active, eating more, etc.
Do you the T:Connect app to check pump data?
I have both T:Connect and xDrip on Android phone that gives me easy access to my data and trends, in addition to vibrate or sound alerts.
Thank you everyone for all your helpful responses. I find your suggestions so useful and reading how you take care of your own diabetes is also valuable. It is a special challenge that I’m not the one experiencing any possible symptoms and our daughter isn’t very adept at reporting.
We had a virtual session with our daughters endocrinologist today and she did some minor tweaking, but otherwise thought I seem to have things on the right track. It was comforting to hear that.
Any other input would be most welcome. I’m always hoping to gain a better understanding of T1D.
Sense my peptide level is to high to qualify for a pump from Medicare. I’ve started to watch the graphic out put of my phone more closely. To get a tighter control on my glucose level . Over the last six months besides bonus dose before meals. I’ve been micro dose to maintain tighter control. The graphic display on the Dexcom meter leads a lot to be inspired
And finally Dexcom “ Share “ has gone from be good to very Unreliable. At one time my wife could be across town and nanowire my Glucose level. But lately is off line more than on. I’ve uninstalled the Dexcom app and reinstalled both only to have SHARE still to be iffy.
It’s natural to look at the numbers more frequently when things aren’t working as expected, but 3x every hour is excessive.
I only do that when I have an unexpected prolonged peak or a severe low and am watching for BG to drop or rise after a correction or fast carbs.
If the sensor is tracking ok and the site is working, the appropriate times to check are the same as they would be with a CGM if cost were no object: when waking, 15-20 minutes before meals, and 2-3 hours after a meal and before bed.
That’s 8x a day. When combined with a Tandem report, that’s enough for calculating any changes to pump settings. Having a TIR of 75% may not be ideal long term but it’s not dangerous unless there are excessive or pronged lows. If there are you should be on the phone with your endo or one of their PAs to keep your daughter out of an ER.
I’d advise that you stop tweaking pump settings and rely on entirely on carb measuring and corrections for now. I’d bet that your endo says the same thing, because it’s not possible for anyone to make rational multiple good, fast, and safe pump changes. It requires either data from a system that is behaving consistently, or an obsessive amount of attention that can’t be maintained.
If rhe pump is left alone for 10-14 days it should be possible to discern a clear pattern and the magnitude of the problem(s). A 2 week Tandem t:conect report can provide that, and the amounts of boluses on the report can be used to approximate the amounts of changes needed.
Without those, and the specific recent training in how to interpret that data, a doctor would be forced to guess and hope, an amateur would have a harder time,