Alert systems for living independently with Brittle Diabetes

My grand daughter is graduating with her bachelors. She is Type 1, brittle. Lots of health issues. But an overcomer. She will go on to law school and we do not want to hold her back at all but we also have no sleep as we watch her constant swings of highs and severe lows…above 400 and below 50. She has a pump and we use Dexcom. We have had EMS wake her many times while in college due to low bs. I would love for her to go law school close by so we can keep her safe but she is brilliant and is able to go to an Ivy League school of her dreams. Are there any recommendations for alarm systems, shaker beds, ect to help us wake our girl and have some peace. She worries about not waking since she can’t feel herself going low anymore and no longer hears her diabetic alert dog. Any advice is soooo appreciated! God bless

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@gagehouse Hello Chrissy, and welcome to the JDRF TypeOneNation Community Forum!

There are devices and you have mentioned two verry effective systems that she already has, if she sets the proper options. The devices: the Tandem t-Slim x2 infusion pump and the Dexcom G6 monitor; she most probably also has a mobile phone that emits a horrendous alarm that even I cannot sleep through if “media” sound level is increased. Before attempting to read law, I suggest she read, and understand, the appropriate User Manuals.

The basic method for setting these alerts and alarms begins in the “Options” menu of the t-Slim and extensive settings are also found in the Dexcom Clarity phone app and the Tandem t-Connect which she should install on her phone. Both her diabetes devices she is using currently have “day” “night” options - my night-time alert settings are set to notify me if I’m predicted [by Dexcom sensor] to fall out of the range of 85 - 140 mg/dl. Decades ago, I was clinically diagnosed as “brittle diabetes” and somehow managed to stay alive for 67 years while learning how to manage MY diabetes - only two calls made to summon EMS.

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Hi @gagehouse. Welcome to the forum and congratulations on your granddaughter’s achievements - past, present and future.
I like to focus on the positive but I do wonder about her ability to function in her field if she is not able to keep her numbers “in line” so I wonder if she is making adjustments to her pump settings based on patterns, or does she leave everything in place because that’s the way it is? It’s possible she’s been using the same settings for so long, she has not thought about changing them, although I would hope her endo is giving her guidance. Do her severe lows happen only at night? Adjusting her overnight basal rate could help with that. At this point I should ask you to forgive me if I am failing to appreciate the nature and challenges of brittle diabetes, but if she is not using her tools to full advantage I would hope things could be better for her if she did.
I’m going to go out on a limb here and suggest she check out the Omnipod 5 pump, which I switched to a few months ago. It also works with Dexcom. In Auto Mode the Omnipod 5 learns the body’s patterns, predicts where the numbers will go in future, and uses this predictive technology to make minute adjustments to basal flow every 5 minutes based on those predictions. If I am still running higher or lower than I want I can change my glucose goals in my settings. There are other settings involved and that’s a very simple explanation but I find its algorithm works better for me than TSLIM. There is a manual mode if the person chooses to use it - and occasionally the 5 may switch you over to Manual mode, so having good basal rates programmed in is important.
I don’t know if brittle diabetes would exclude her from using it but it might be worth discussing with her doctor.

A while back there was a discussion on the forum on how to wake people who sleep through their alerts. There were several suggestions - most memorable for me was someone putting their phone in a tin cup and having it vibrate as well as sound, to increase the noise. Here’s a link to a search for the term “wake up” - you’ll have to do some scrolling to see which apply.

I hate to say it but I’m kind of hoping she is not yet doing all she can, and maybe she can make some perhaps not-so-simple changes that will help her get more control over her brittle diabetes. Again, if I am out of line and failing to appreciate the nature of her brittle diabetes, I ask your forgiveness.

PS - some people are just naturally very hard sleepers (I fell asleep at a Parliament Fundelic concert once!) and sleep through their alarm clocks, fire alarms and sounds that wake most people. That could be due to a sleep disorder. In that scenario she’s conscious but sleeping so hard she doesn’t hear the alerts warning her she’s going low; in the second scenario she is already unconscious.
You might look into a sleep study to see if something is going on there that can be addressed, to train her to not sleep so soundly.

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I hope your granddaughter can find help to get her condition more manageable. I have large swings at times, but not to the degree you describe. I would say that a good Endo support team is the most important thing. With their guidance she should be able to figure out the best tools for her needs. Does she qualify for an aid to live with her? Sadly, CGM alarm fatigue can happen. Not sure if that is what is happening.

One factor that I’ve heard contributes to brittle is stress. I hope she considers how law school will contribute to her stress. Based on my experience, which was a long time ago, law school was very stressful. The deadlines, competition and workload is unimaginable. I’m glad I did it, but it was rough. And, the practice of law is also very stressful. Just something to consider. Her goals are commendable. Of course, you are proud. Best of luck.

Dee @HighHopes, “brittle diabetes” is not related to, or caused by stress. Brittle Diabetes is a clinical diagnosis that indicates that beta-cells have been totally destroyed to the point where they do not produce any hormones - insulin is only one of [at least] two hormones produced by beta-cells; another Beta hormone is amylin, which among other functions tells the body to cease dumping large amounts of glucose into the blood stream.

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Right, but I’ve read more about other factors lately….especially a piece in Journal of Diabetes, New Look at Brittle by Irl Hirsh, MD and Linda Gaudiani, MD. I’m not posting the link, since I think there are rules about that. I’ll PM it to anyone who is interested. I found the article very interesting.

I know for a fact that stress affects sugar levels. During college, at work with stressful situations I constantly had very severe lows that were result of correcting highs I got due to stress.

Now, my blood sugar rises when I get upset or nervous, then it goes down by itself. I don’t know Omnipod, but My dad just switch to Tandem and is doing very well, no lows during the night etc. I am trying to get mine asap. I used to turn off alarms because of coworkers reaction…… maybe she doesn’t have alarms sound which is ok during class, but maybe she can check Dexcom before class and discuss with endocrinologist if she should lower basal for duration of each class. Mention this to her and if she talks to her endocrinologist and dr can make suggestions regarding use of temporary basal.

Very important is blood test before driving even if she feels ok!!! I lost consciousness while driving home because the drive took double the amount of time. I was perfect I thought at work an hour earlier.

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Have you considered the Sugarmate App? I use it and have set it to call my wife phone if I go too low. I started using this app while traveling for work. By giving my wife the information of the hotel where I stayed it added an extra layer of safety as if her phone rang she could call the hotel to help me. I would also let the hotel know that this could happen and if they received a call it would not be a prank but instead it would be an actual emergency. No guarantee that this will be your answer but I use this along with my Service Dog.

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