Why is Your Child’s Diabetes Keeping You Up at Night?

   I’m not saying that there were not times that we went through the night, I am not saying that we had our share of long nights, what I am saying, or asking actually, why are you not finding some nights to sleep?

As a reminder, my daughter was two when she was diagnosed in 1992.  No cgms, no pumps, no ‘in the cloud’ anything, and most certainly no alarms, warnings, bells, whistles, or even a muted buzz……nothing.   And still we found time, every now again, to get a night’s sleep; more than you would think.

I read more and more and more of people sharing on social media that their child was diagnosed 3 years ago (or whenever) and they have not had a night’s sleep since.  Really?   Why?  Look, surely with two kids living with this disease from ages 2 and 13 respectively I get it, but not figuring out a time to find sleep with all of the incredible management tools in existence today; I’m truly asking for your input on why sleep is so hard to find?  Help others, share.

I remember the doctor also telling us that Kaitlyn would be living with ‘brittle diabetes’, a phrase I hated back when and one I still hate today.  The meaning; almost inexplicably, her blood sugars would drop sudden and drastically with what seemed no explanation.  But we never believed that. We were constantly trying things to see if more practicability could be entered into the equation.  Sometimes it worked, and sometimes it did not.

My heart truly goes out to those who can find no sleep.  I’m not here to judge and I’m certainly not here to say you are doing something wrong.  But I see that written so often so what I am saying, or asking rather, is if you were living in absolute fear that you were not sleeping during the night after your child’s diagnosis…….and if you were able to change that somehow……..share your experience.   It breaks my heart to think people are so sleep deprived when I’m not so sure they need to be.

So please share your experience and perhaps it might wake us up a little on what needs to be done to grab a night’s sleep.   Thanks for sharing.
I’m a DiabetesDad
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10 replies on “Why is Your Child’s Diabetes Keeping You Up at Night?”

In 1974 when I was diagnosed, my mom sent me off to backpacking in New Mexico for 32 days. No cell phones, no CGM’s and no pumps. Guess what,, I lived, as did most of us who were diagnosed before 1990. I am not saying parents do not have a right to be scared, I would be. But we also need to understand a high blood sugar or a low one will be OK.

It is always so hard to grasp especially with the incredible tools we have today……yes they can malfunction but they are really useful. Concerned? Worried? sure we were but I seem to see the sleepless nights now, more than ever.

I think sometimes…. as much as I love the technology, it can make you a little crazy. Before tech… you didn’t know what you didn’t know.

It would be cool to argue this point…..but I cannot. It’s like an endo with a t1d kiddo once stated to me…….I know too much to have to now live with it……Ouch!
Thanks for writing.

I too am a ‘Diabetes Dad’, our daughter had just turned 3 when diagnosed (in 1993). My wife and I were advised that should she hypo in her sleep she would get restless (adrenaline reaction as I recall) and either wake up or wake us. (Of course we were also aware of the other option.) We both slept pretty much as normal, though on somewhat of a hair trigger for any noise from the bedroom – though that’s a parent’s lot anyway I think. Her bedroom was right next to ours, and we left the doors open. On a few occasions we were woken, but very few. Once or twice only we tried to do a BGL check while she was sleeping – it was not appreciated at all. 🙂 Our daughter was on two mixed injections a day (Actrapid and Protophane) and, very fortunately for all of us, this worked well for her. Yep, it was often scary (still bloody is at times), but she is now 29, living solo and pumping (though not using a CGM). She continues in excellent health – long may it stay that way.

Thank you, Bill, for sharing your story. Although the night time checks were never appreciated….she never remembered in the morning. If it needed to be treated……rarely was that remembered either. A few times, in the morning, we were met with….”Hey, did you come in my room last night?” But other than that….no memory. Thanks again for sharing.

I completely understand your perspective Tom because I feel the same way NOW! My daughter was diagnosed at age 2 as well and dang if we had any technology then. Was it available? Yes!, were we afraid of it?Yes! who knows why I think I thought a cgm and a pump back then was as invasive as surgery, how far we’ve come! I’ve questioned that many times when I hear other parents say they never sleep and I think my goodness am I not a vigilant Type 1 parent because I sleep through the night? I dont know…. I know I trust the CGM ABSOLUTELY! And this is going to sound crazy but I almost always know what her blood sugar is before I even look at Dex, from the beginning I have had this weird feeling if shes low or high I wake up out of a dead sleep with or without the alarm maybe I have Type 1 ESP or I’m secretly a therapy dog and dont know it!

I have two boys with T1D and they both have CGM, Dexcom G6s. When my oldest was first diagnosed he didn’t have it and we were constantly checking his sugars and now that he has it it’s all I watch. It’s almost like too much knowledge is too much. I find myself watching it all the time, getting up in the middle of the night treating one with high sugar or the other one with low sugars, it’s exhausting. I work nights so I’m use too being up all night but I also don’t sleep much during the day either. When I’m at work I even monitor their sugars. I’m just so tired and burned out and I’m not sure what to do about it, but I do know I am doing my best.

OH my…… I remember the days of dealing with checking…..again,and again, and again.
Do you have alarms? Try setting the alarms (and at the beginning, make them pretty high—-you have to get used to them first or you will spend your time checking between alarms).
When it alarms check….but do on check in between alarms…….keep lowering the number until you are at a level that you are comfortable with that is when possible intervention might be needed by you. Something to try. Good luck.

Hi Tom; Our daughter was diagnosed in 1997 long before any of the newer technologies and my husband and I would take turns checking her late at night right before we’d go to sleep and depending on her b/g would either re-check later if low or high or (gasp), sleep through the night.

I do agree that sometimes too much technology is not a good thing; in fact our daughter wears a Libre and now it’s compatible with her phone (Android) and she asked me the other day if I wanted access to her Libre on my phone. She is now 27, lives in Newport, RI alone (with my 3 grandcats and 2 grandbunnies,) and has taken good care of herself since flying solo; do I want all that information at my fingertips living 2 hours away? No thanks, I’m a worrier and that would exacerbate my worries in my opinion. I trust her with her own care and have taught her well these last 22 years; I have to have faith in her and the powers above to watch over her. I fully agree that sometimes too much information is not good and can in fact be harmful to all involved. Just my take on this.

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