We’ve been dealing with T1D for a while. Now getting ready for college life. Our son has an Omnipod and Dexcom CGM. He never hears any alarms at night - low or high. We have tried LOTs of things. He even has researched ways to not sleep as soundly - so we got a hammock for him to sleep in. doesn’t do it. We’ve tried Sonic Alert - a wide range of their things made for hard of hearing and deaf community. The bed shaker does not work. The vibrations or noisy arlms dont work. We cannot afford a diabetic alert dog and he’s getting quite upset. feeling he’s stuck with us forever unitl he can get in a study for a closed loop system or the TB vacinne study in Boston starts (and it’s successful for him). What do others do for sound sleepers to gain their independence? And for mom to get a night off (I know that’s selfish). thanks
my unqualified guess is this: he is not yet upset enough to do something different for himself about it.
you wanting a night off is NOT SELFISH… who is going to take care of you?
anyway I think this problem solves itself when he goes to college. other than that, after having studied the engineering arts, I could rig a taser that would wake him up - I guarantee it! though he may never speak to you again.
on a slightly less kidding side - They say that “children” will sleep right through a fire alarm, but will often wake up to the parent’s voice. He could record you on a voice memo, change it to a ringtone, and use that override on his phone to try to wake up. I can’t think of much else. good luck! please take care of yourself!
Thank you Joe. The problem is - I can’t leave his life in some college roommate to help him out. I went to college - I know how that phase of life is for some/most.
the next layer of this issue is he wants to go to college in Japan. oh - dont get me started on that! yikes.
Has he tried setting the receiver to vibrate? Ironically it appears under the Volume settings so it’s rather hidden.
Yes we’ve tried that as well. The way we’ve got it set up right now I can hear the alarms upstairs and down the hall from his room - in a well insultated house mind you - before I hear them on my phone through the CGM follow app. So hi or low, sonic boom and vibrate…nothing has worked so far. I even had it set up to a strobe/disco light in his room trying a visual to wake him up - but that didn’t work either.
@klawliss45 Welcome Karen to the JDRF TypeOneNation Forum!
My first thought is that somehow you son may have “programmed out of his hearing range” the Dexcom CGM alarms. That could have occurred over a period of time when he knew that you [or someone] would hear those alarms ans alerts and take action for him. When he takes off for college, without you, he may begin hearing the alarms.
I use the Dexcom G5 and have very poor hearing and I’m a very deep-sleeper [my wife of 53 years has to work hard to awaken me at night] but my body is tuned to hear the Dexcom [and Tandem t-Slim] alarms, including sometimes the the sound of the Dexcom vibrating on the night-stand; I do remove my $7,000 hearing devices before getting into bed.
Hi again Karen. Me again . I just wanted to let you knew I went to college with diabetes and my roomies were great. I let them know when we first moved in together what it meant if I stayed behaving a certain way (we didn’t have BG meters then), and what to do. I only had 1 emergency in my dorm - actually my roommate was out at the time so a neighboring student helped me.
When I was in college we didn’t have support groups for students with [fill in the blank] but I understand many do now - I gather you can check them out at the medical office, and it could be a good resource for roommates as well as the person themselves.
We’ve grown to rely on CGM technology, which is great. But I believe it’s important to know how to get along without it, not just with diabetes but life in general. Okay, you can call me old If you like. I think people should recognize their low BG symptoms, assuming of course that they don’t have hypoglycemic unawareness; and sometimes I wonder if people may not be assumed to their body’s signals because they count on the CGM. I tend to drum my fingers when I’m low and if I am relying completely on my CGM I may not make that important connection if they do it while I’m warming up a new sensor. See if your son can identify sensations that go asking with low or high BG alerts - sometimes I get them even before my assist goes off! It may help him to consciously recognize them so he can even do it in his sleep even if his Dexcom doesn’t wake him up.
Hi again @klawliss45, and thanks for your updates. I walk past a sleep clinic to get to my doctor’s office. We (well I) automatically associate sleep clinics with insomnia - lots of people are desperate for a good night’s sleep or don’t wake feeling rested and recharged when they wake in the morning. But thinking a little outside the box with regard to what you shared about your son, I’m wondering if some people may sleep too soundly for their own good? Maybe he could have a sleep study done and specialists in that area may be able to shed some light and provide treatment. Once when I was in college my roommate and I both managed to sleep through a fire alarm - and it was literally outside our door. Thankfully we were on the first floor and next to the exit, so if there had been a real fire (someone had pulled the alarm and was subsequently expelled) we should have been able to get out even if we woke up late in the game. I guess we had both just had a really hard day and that was not typical, but I’m just sharing that to say it may be possible to sleep too well.
On the other hand - and I may have missed this - I’m wondering if he is sleeping through the alerts because low BGs have caused him to drift into unconsciousness? If that’s the case he could - should - work with his physician to adjust his overnight pump basal rates or long acting injected insulin, as well as get recommendations for bedtime snacks that will stick with him while he sleeps. Also, while doctors give us target numbers to shoot for, they may set them higher for safety sake if other measures don’t work - or while they are trying to put those measures in place. If your son is going low overnight because he’s shooting for a fasting number around 100 that may be too low for his safety.
And if I might add - I love how you are on board with getting input on your son’s behalf. After all, any medical condition affects not just the patient but the family, and I wouldn’t dream of telling you to do otherwise. You are “mama bear” after all and it’s in your DNA. But since he is now 19(?) and getting ready to go off to college, he needs to be doing some of the legwork himself as well. So while you’re doing what you’re doing, make sure he is doing some independent research of his own if he’s not already actively involved. Whether he’s in Japan or Georgia, or wherever college and life may take him, his health will be largely in his own hands.
Try not to panic - many others have done it and he can too.
I kind of agree with @wadawabbit. I had neither a CGM nor a roommate in college. I just had to trust a) my ability to accurately dose my insulin and b) that I would wake up if I was feeling sick. Not to say that I wasn’t nervous about it, but the way I saw it I had no other choice. I had to leave home eventually. Do you know if your son will wake up when his blood sugar is low? Or have you always woken him up after an alarm? (I’m assuming the alarm goes off a little before it actually gets real low.) Does he know how his body reacts to low blood sugars at all? I get sweaty and nauseous when my blood sugar goes low during the night, so if I wake up really sweaty I know to check my blood sugar. If he sleeps through everything, how is he planning to wake up in time for classes? He’s not the first kid to have grappled with that dilemma going off to college. My own sister was like that. Her radio alarm would wake up the entire house, but she’d only wake up to the sound of me or my mom yelling at her to shut it off. When she got to college her roommate demanded she sleep with headphones on if she was going to use an alarm in the morning, so that’s how she went through freshman year. Made it to class just fine without a parent yelling in her face. Necessity and the anxiety it brings have more power over us than we give them credit for.
Thank you for responding. Everyone has been giving great tips. The truth is my son doesn’t wake up to low alarms or high arlms, smoke alarms, or anything else. His CGM alarms for him - after he’s been out of the preset range for five minutes. For me, my alarm doesn’t go off unitl he’s been out of range for 30 minutes. That gives him time to react or not before I do. This isn’t a willful act, even on a subconscious level. He really has a strong desire to wake up on his own. I am going to look into a sleep study and get some ideas there. Thank you all! Even his endo said we’re stuck until we can get a closed loop system.
I haven’t tried but my doc said put it in a glass It May be louder
Hi @klawliss45. I was scrolling through the forum and though I’d check in to see how things are going with your son. I how you’ve made some progress.
Thank you for checking.
Nope - not a shred of improvement or progress. We’re just in a holding pattern now until we can get a device that will make basal adjustments automatic or a study opens up. Our insurance won’t cover a new device until Dec 2020. So…
we just grin and bear it.
I’m always looking though.
How old was your son when he started to take over the management of his diabetes? Not to be the jerk in the group here, your son is in college now and it’s time to grow up. He’s going to have to learn to take care of himself and not rely on everyone else. I went to college without a CGM and used just BG meter with hypo unawareness. Having to rely on medical technology to prevent low blood sugars whether it’s a loop or CGM is not good diabetes management.
I’m so sorry to hear it. You may well have checked this out already but sometimes insurance does make exceptions if your doctor is able to document medical necessity to their satisfaction - or used to, anyway. If he’s needed help recovering from overnight lows because he didn’t hear the alerts that could help his case.
Another option might be to set a higher overnight BG goal/lower overnight basal rate/s so he’ll have more of a “cushion.” People with hypoglycemic unawareness may have a higher target number than others, and perhaps that could apply here. Sorry if I’m sticking my nose in - as you may have noticed I like sharing my thoughts. Wishing you the best, and if you find a solution that works please share!
How has your son managed with college? My son is exactly the same and wants to go to college next year. I am super worried about him not hearing the alarm. Several years ago his pump delivered an overdose (19 units in one go) - he was rushed to the hospital and nearly died so that’s only fuelled my concerns all the more.
If you have any info you can share, l would really appreciate hearing from you. Smiles, Su
Hi @Mumofson . Is it just the pump alarm he has trouble hearing, or does he sleep through alarm clocks and others as well? I was out of college before we even had BG meters😳 and enjoyed having the house to myself when my family traveled. I tended to wake up if I “felt funny” but I would also set an alarm to go off every 3 or 4 hours so I could check myself when they were away.
How does he manage/what does he do if he’s got the house to himself for a few days? Perhaps that past experience has helped him be more vigilant?
Don’t discount roommates - I had great ones, You don’t want to assume of course, but just because he sleeps through an alert does not mean they will.
My son has done college online and then only a short certificate program. We’re waiting on the new tandem that communicates with his CGM. It wont deliver glucagon (not a closed loop) but it will stop the insulin when he’s falling. I’m hoping this will be enough to get us through the night safely.
Exciting news! I use T:Slim with Control IQ and is great (I used Basal IQ for a while - it adjusts for lows only and that was great as well). Just know it will probably take a bit of tweaking to get the background settings in place for it to do its job. I get alerts letting me know I’m expected to drop below 70. Working with his doctor to set an overnight basal rate that aims for a target on the high normal side, might help decrease those alarms while he’s asleep.
Joe- there was a member named Niki who posted last december that she needed supplies, i can’t seem to reply to her post bc it is closed. how can i get in touch with her? Thanks! I just posted in a forum that i had supplies to give away to those in need - but would love to be able to let her know there is help out there if she is not checking the forum.
As for Karen-
MY son has the SAME issue…i am scared to death for the fall when he goes away. No only will he not hear his alerts but i fear his roommates will want to strangle him…but we recently switched BACK to the Tandem and Dexcom system from the medtronic and what a huge diff it makes in controlling his sugars…his alerts at night are gone as it really helped to level him out…or it could be timing and hormones now that puberty has drawn to a close…just wanted you to know that you are not alone xo