Looking for research or help. Long-term sleep deprivation management? Anyone?

[bisous]

My DS1 was diagnosed with type 1 diabetes almost ten years ago. Since that time, I think an uninterrupted stretch of sleep of 8 hours has happened a handful of times for me. Instead, waking up several times a night to test blood sugar or administer insulin or sugar is my "new normal". I'm lucky that I can fall asleep really easily and don't need as much sleep as many of my friends, but I think it is starting to hit me. It has also occurred to me that while I'm more than happy to carry this burden as long as DS is with me, in less than seven years he'll be off at college and handling this alone. This makes me want to know the best way to handle sleep interruptions and do some research on that end! Also, I feel like I'm getting sloppy sometimes in managing DS1's diabetes. It is really hard to make good decisions night after night after being awakened from a dead sleep. It probably sounds unfathomable to you, but there are times when I've simply slept through the alarm for his low blood sugar. Thankfully it has not had any lasting effects but it is hard to feel a piece of that guilt all the time. I feel like in some ways this is a topic for a board dedicated to type 1 diabetes but it is almost too controversial and tough to talk about in those circles.

So instead I'm turning to the BBB to see if anyone has done any research on long term sleep deprivation and how it can best be handled. I'm thinking maybe the military types might have had some training? Or other kinds of disabilities might also require sleep disruptions? I guess I'm trying to find little ways to learn how to be better rested when sleep disruptions are inevitable and how to train myself with more mental toughness not to be so groggy when making really critical decisions, like giving correct insulin doses!

TIA!

[Cam&Clay]

You are the only one who monitors his blood sugar during the night? That kind of sleep deprivation is horrifying. I know just after a few weeks of interrupted sleep with a newborn I was hearing things that weren't there. No one should have to deal with that on a consistent basis. Does your DH help at all?

[bisous]

You are the only one who monitors his blood sugar during the night? That kind of sleep deprivation is horrifying. I know just after a few weeks of interrupted sleep with a newborn I was hearing things that weren't there. No one should have to deal with that on a consistent basis. Does your DH help at all?

He does. We work on the balance all the time (because it is hard to have two people in charge of the same thing, if that makes sense) but he does anything he can to help. The reality is that he sleeps through alarms more than I do. Often it is easier to deal with things myself than to try to wake him up. I tend to have him handle things in the earlier evening and I handle the middle of the night episodes.

[Cam&Clay]

He does. We work on the balance all the time (because it is hard to have two people in charge of the same thing, if that makes sense) but he does anything he can to help. The reality is that he sleeps through alarms more than I do. Often it is easier to deal with things myself than to try to wake him up. I tend to have him handle things in the earlier evening and I handle the middle of the night episodes.

That's what I was going to suggest--some kind of a trade off. I know with XH (DH was in Iraq when DS2 was a newborn), I did the 2 am feeding and he did the 6 am so that each of us got a good block of sleep. You need some help! I don't know if that kind of deprivation should be managed as much as it should be reduced. You'll be a better care manager if you are at your sharpest!

[daisysmom]

I don't know of the research you are asking about. But I will say that just yesterday I was having a conversation with DD's friend's mother whose daughter (DD's friend) had Type 1. I know the mom well and we were talking about how I am often up in the middle of the night worrying about this or that and she was telling me how important it is to get 8 hours of uninterrupted sleep. Her DD has an insulin pump. Do you all have that? This child has spent the night with us before, and I never knew to check or do anything about her diabetes. I thought the pump did that work? She does check herself (she is 8) after she eats, and the first time she came over her mother told me to have her call after she checked. I would see if there is a better way to control this than you having to get up every night.

[Kindra178]

I don't know of the research you are asking about. But I will say that just yesterday I was having a conversation with DD's friend's mother whose daughter (DD's friend) had Type 1. I know the mom well and we were talking about how I am often up in the middle of the night worrying about this or that and she was telling me how important it is to get 8 hours of uninterrupted sleep. Her DD has an insulin pump. Do you all have that? This child has spent the night with us before, and I never knew to check or do anything about her diabetes. I thought the pump did that work? She does check herself (she is 8) after she eats, and the first time she came over her mother told me to have her call after she checked. I would see if there is a better way to control this than you having to get up every night.

DS1 has a friend with the pump too. Other than eating lower carb diet (he will eat a burger or hot dog without a bun), I would never know this kid had Type I. He has slept over a few times too and I have never checked anything. He checks his blood sugar (age 10) and then texts his mom (he has a phone for this reason). I didn't really get involved except for cooking/serving food front.

Interested - why is this controversial on the type 1 boards?

[babyonway]

I have T1 and have had it for 30 years. From your previous posts, I know your DS has a pump and the low blood sugar alarm I am assuming is a CGM?

I think it is concerning that what you are describing about these late night episodes are the rules whereas these late night episodes should be the exception if his bolus and basal settings are accurate and carbs are being counted and bolused correctly.

I know you weren't asking about T1 management but from your post I am more concerned about that as a T1 myself. Does his endo know that you are waking up multiple times a night for care? With a pump and CGM like I said those should be exceptions not rules. And I do know that there are outliers that cause BS to get whaky even with appropriate care but those should be outliers and not "your normal".

What does your DS's endo say? How often have you seen them? Are you sending them pump and BS readings on a weekly basis for necessary adjustments?

[basil]

I'm going on 2 years of not sleeping through the night due to my laziness in weaning my daughter.

Worst part is that if I'm away, she will sleep through the night knowing I'm gone, but I will wake up around 3 am and be awake since I'm so used to it.

I compensate by spending a longer than average time in bed. My Fitbit says about 9 hours though only 7.5-8 of those are actually sleeping. There is no substitute for sleep.

[bisous]

DS1 has a friend with the pump too. Other than eating lower carb diet (he will eat a burger or hot dog without a bun), I would never know this kid had Type I. He has slept over a few times too and I have never checked anything. He checks his blood sugar (age 10) and then texts his mom (he has a phone for this reason). I didn't really get involved except for cooking/serving food front.

Interested - why is this controversial on the type 1 boards?

Well, there are lots of parents who never check blood sugar at night, like your DS1's friends. Actually most of the boards I'm on DO check blood sugar and are really opinionated about people who don't test. So if anyone brings up the subject of getting tired or needing more sleep it becomes...problematic. It doesn't help that this particular board is a snarly place right now. So if I were even to bring up exhaustion I'd get a lot of "Well I love my kid so I just deal with being tired..." nonsense. It's not nearly as friendly a place as the BBB so imagine a thornier issue than yoga pants and you'll get an idea, lol.

I think some endos actually push not to test at night because on many families the strain is just too great. There are two potential downsides to not testing. If blood sugars routinely run high at night, there are great future risk of diabetic complications. If they are too low, the risk is immediate. There is even a phenomenon know as "dead in bed" that isn't thoroughly understood. A kid with type 1 will go to bed very much alive and just never wake up. Scientists believe it is due to blood sugar that dips just too low. There are plenty of other thoroughly documented low blood sugar effects. The biggest are seizures and coma. I'm fortunate that DS1 has never had a seizure even though his blood sugar has been low enough to be there before.

We have all the latest technology including an insulin pump and a continuous glucose monitoring device that alerts to my iPhone. The technology increases are incredible and have really helped my sleep in that I don't worry quite as much and I'm only awakened at night when things are off instead of getting up to do regular testing. Still, we have episodes fairly often. We have very tight controls set up and are considered to be model patients by our pediatric endo.

Everybody that I know personally with type 1 diabetes tests overnight. The adults monitor with the same technology. Often they have their partners trained to respond to the same alarms that I do as a parent. I have heard that parents have it tougher than people with the disease because we simply worry more. This is coming from a friend that both has type 1 and has a 3yo with type 1. But even still we aren't sure what the best solution is.

[kristenk]

Sleep deprivation is horrible. I've been dealing with self-imposed sleep deprivation for many, many, many years and I finally did something about it just last week. Before my changes, I would watch tv in the evening with DH after DD went to bed. I knew that she liked to go to sleep while someone was out in the living room (I was the same way when I was little). Anyway, we'd watch tv then DH would go back to the bedroom and I'd go into the kitchen and realize that dinner dishes were in the sink. I didn't want to wake up to smelly dishes so I'd go ahead and wash them. Then, when I went back to the bedroom, I'd shower b/c I always shower at night and have a hard time going to sleep if I don't shower at night. Usually by the time I got out of the shower, DH would be asleep. I'd read a little bit while waiting for the lotion on my legs to dry. I'd turn off the lights around 11:30 and say prayers, but I'd be so tired/wired that I'd almost get lost in the middle of my prayers and my mind would wander but I knew I couldn't sleep until I said them. By the time I finished that, I'd often look over at the clock and it would be 12:40 or later by the time I was ready to go to sleep. I finally realized that wasn't working for me. (Imagine that!)

When I decided I needed to make a change, I looked at what I couldn't change and then worked from there. In my case, my alarm goes off at 6:25 and that's something that I can't change. If I need to sleep more, I need to get in bed earlier. For me, that means making sure the dishwasher gets loaded and dishes get cleaned as they are used. I still play catch up sometimes, but I'm doing that during the middle of the day. I also makes sure that DH and DD are pulling their own weight and taking care of their own stuff and not leaving it for me to do. I go to shower as soon as DD gets in bed. DD knows that I'm off to shower and unavailable. I can get in bed before 10 now and am not fighting that "second wind" that I'd get after 11pm. So far, it's working and I'm not snacking my way through the day in an effort to stay awake!

Anyway, my recommendation is that trying to work with sleep deprivation isn't the answer. If people are trained to deal with it, I think it's more for limited time scenarios, not 10+ years! Really look at what you can't change and try to work around it. How often do the alarms go off? Can you trade off with your DH? I know that he manages one part right now and you do the other, but if your part is the only one that leads to sleep deprivation how about trading jobs every month or so? Is that possible?

Hope something was helpful in there!