My T1 son is in college and has not been hearing low alarms on his Dexcom at night. He has me on the share app so I get the alarms and am freaking out because he is not responding. Last night after several urgent low alarms and me texting him several times and calling him several times, I almost called campus security to make sure he was okay when he finally answered me. Does anyone have a similar experience or any solutions to this problem? I am a nervous wreck over this!
Many of us living alone have the same issue, sleeping through the low alerts on Dexcom app.
Have you considered using Sugarmate?
I am not sure what Sugarmate is but I am going to research it right now!
My parents made me get a landline for this reason. Only for use of lows that I don’t respond to and only ones who have the #. It’s come in handy a few times. I sympathize what you go through.
Is he doing injections or pump?
The latest pumps can integrate with cgms and stop insulin delivery, which causes bg to rise, preventing low and not getting to point of alarm.
Tandem pump with Dexcom, or Medtronic with Guardian.
Also Loop with omnipod, but this is homegrown system, but many happy users here.
One recommendation I’ve seen here is to put the CGM receiver (or phone) in a glass so that it makes a lot more noise. May not be great if there are roommates.
He has the Omnipod. They are awaiting FDA approval for their closed loop system. It should be anytime now form what we are hearing.
Yes we have tried putting the phone in a a metal bowl to make it louder for him. Maybe we will try the glass.
Or you could try this…
I almost have my phone on silent or fall asleep with it paired to my headphones so urgent alarms could t be heard at all…. The receiver is both much louder and vibrates much harder
I find keeping it in my pocket of my pajamas or shorts or whatever when I’m sleeping is pretty effective for me even on silent because it vibrates hard enough to wake me up if it’s touching me… and I’m a sound sleeper
Sugarmate is probably the easiest solution. We asked my freshman son to do this, but alas, he has chosen not to. On the other hand, he has actually woken up to his alarms for the first time in his life, and so we aren’t pushing it too hard. The other thing for us, is that he doesn’t have a roommate to bother so we don’t care how loud the phone call from Sugarmate is. We also have his RA’s number in case he goes low and stays really low and is unresponsive for a few hours. Otherwise, we are leaving him alone.
I don’t wake up to alarms, and I tried this. But it did not work for me: I must more more insensitive than most to alarms.
@Chris, I am, working on using IFTTT and Nightscout like @TiaG did. I already mocked up the system with an alarm and a strobe so that it works on a phone call trigger (so my parents can call and trigger it). I have not tried waking up yet with it yet, or the IFTTT part. Maybe he will be interested in doing this too? I remember he likes to build lots of things himself.
If I don’t wake up still, my next step is to try a bedshaker: I think you or @ClaudnDaye suggested it a couple of years ago. But my bed is super heavy, and I don’t have springs (it is a Japanese-like bed) so I am not quite sure if it will work on my setup.
How was he able to do that? Did he have to explain that he is T1D? In most schools I looked at you have to have a roommate. I’d like one but I know the night alarms are going to be a problem.
@mlg, for the past year I have been Looping with Omipod and Dexcom. I also don’t wake up to alarms. I am not in college yet but I am a junior in high school. With Loop, it is a lot less likely that “I’ll wake up dead” My mom is not really a techie, but with the instructions on LoopDocs she has been able to compile my apps, and I know I could do it too (but she is really nice and does it for me).
I am also working on a system to trigger a siren and strobe lights: I already have it working from a phone call as a trigger. It requires wifi. I use a Yolink hub. I plan to use Nightscout to trigger IFTTT, so that I don’t need a phone call trigger, just a low BG. Once the whole thing works I’ll start a thread here on FUD and explain how it all works: absolutely anyone will be able to duplicate it. But @TiaG has already done one like that.
The only thing that wakes me up are getting actual phone calls from SugarMate, using the alarm ring tone. Otherwise I am alert and alarm deaf also.
Kaelin, it was pure and unadulterated luck that he got a room by himself. He was assigned a dorm that has 4 boys sharing a suite (common area with a kitchen and living room and two bathrooms), but each of the boys gets a room to sleep by themselves. You can look at universities that offer the 4 person suites, although some we visited had two people in each bedroom (i.e. two bedrooms instead of four). But I think that more universities are doing this because the students prefer it.
I had him sign up for the Sugarmates. He has it set to call him at night if he does not hear the alarm. He also has a roommate who understands T1 and is pretty good about watching over him. (I kind of feel bad for the roommate though, but I don’t think it bothers him too much since he chose to live with him for a second year!) My son keeps telling me I should get rid of the Share on the Dexcom. He thinks this is stressing me out too much and that he can handle it. I am wondering how many parents actually keep the Share active when their kids go to college. I asked his DNE and she said some do and some don’t.
We keep it active, but honestly we only ever ask him about it if his low lasts longer than 2 hours, which is really rare, so we don’t feel we are an active part of his management. It doesn’t stress my wife and I to see it, and it is comforting to know he has a sensor in, so more than anything it is that comfort that keeps us from unplugging from the Share.
My son is only 7 but I will probably be watching his sugars as long as I live if he doesn’t force me to stop. A parent never stops caring.
I didn’t read all replies so this may have been said, but I change up the alarm sound from time to time. I think we can get used to a sound and sleep through it, but changing it up can help? There’s one in the rotation of a crying baby sound that is a little weird when it goes off in public, but always does the trick at waking me up middle of the night ha ha but I still change it up.