My toddler was recently diagnosed with type 1. Currently, she spends most of the day/night between 80-110. However, every time she falls asleep, like immediately afterwards, her blood sugar spikes to right around 180. Higher if she has a cold. Is anyone able to explain the functions at play that cause this to happen? I’m just very curious and have found no literature on it. I don’t know if it’s relevant, but she’s been off insulin for the last two months or so. Thanks in advance for any insight!
Welcome to FUD!
There is a lot to consider here. Like if it is something that she ate before she goes to sleep, basal settings, pump response (like if you are using a pump with automatic basal adjustments like a Tandem or OmniPod 5), or if it is her alpha cells that are still responding to a drop in her glucose levels.
For everyone here who engages in this conversation, it might be helpful to go through some of the specifics you have. Like how you deliver insulin, timing of insulin delivery, and how long ago she was diagnose, when she eats, timing of it all, etc.
And I am very sorry that you “have to” be here, but I am glad you found us.
So, she isn’t using insulin. She’s currently within her target range 98% of the time without any exogenous insulin. Even just one unit of lantus was leading to multiple lows, so this is where we’re at for the time being.
Before nap, she is having lunch about an hour prior and then we go for a walk around the block before settling into bed. She eats sugar-free yogurt with chia seeds, hummus with cucumber and sliced turkey almost everyday for lunch.
At bedtime, she is eating about 2.5 hours before bed. But, we don’t typically do much after dinner aside from running around the house. She typically has some animal protein, some sort of legume or bean and a vegetable for dinner.
I was also thinking it could be her alpha cell’s overcompensating for sleep? I’m wondering what, if anything, I can do to try to get those numbers down just a bit.
Welcome @Eaden to our corner of the internet. There are some parents with young T1s here that might be able to help that I’m sure will be along shortly.
Hormones are most likely the cause. This impact on insulin effectiveness. It is quite normal for a toddler to have higher bg post meal, particularly if the bg comes back down shortly afterwards.
The studies you need to search for are about normal bg ranges of non-diabetics.
What brought on the T1D diagnosis?
If you have not listened the Juicebox Podcast the info and 30,000 FB group is a great resource and learning environment.
Juicebox Podcast 411
Diabetes Pro Tips
@Eaden Welcome to FUD! While I don’t have experience with young children to help, you can bet someone here will be able to point you in the right direction to help resolve your situation. You can also search out Juicebox podcasts (https://www.juiceboxpodcast.com/), the LoopnLearn website (https://www.loopnlearn.org/), and Waltzing The Dragon (https://waltzingthedragon.ca/) to help you with any problems. All of these are good sources of information, have been established and run by those with the disease or have kids with it. As always, you need to be the judge what you trust and what you believe is the best for your child. Sorry you’re having to face the issues, but congrats for finding good people with lots of knowledge and advice worthy of your consideration!
Do you mean sleep-related hormones? Her BG does come down very quickly as soon as she wakes up from nap. It’s back down to 110ish within 30 minutes. At night, it slowly tapers until about midnight and then cruises between 100-80 until morning.
I guess I’ll have to do some reading about typical toddler blood sugar levels. It’s so hard to find anything on this age group!
As for her diagnosis, she had been drinking water excessively and soaking through her diapers at night. We took her to the pediatrician on a hunch and were sent to the ER and then admitted to the PICU where she received treatment for DKA. This was four months ago.
I haven’t listened to that podcast yet, but I will prioritize it. Thank you so much for sharing the resource! I’ve always been a big reader/researcher and welcome any other resources that you think might be helpful.
Hey @Eaden Welcome to FUD. And yes I believe they are talking about sleep-related growth hormones (or that would be my guess anyway). My son wasn’t diagnosed until 12, but as he went through his growth cycles, right after falling asleep he would get one jump in blood sugar then often another one in the middle of the night. The hormone highs were very resistant to being brought down and often led to over-dosing insulin and roller coaster highs and lows. It was pretty frustrating until it settled down after my son stopped growing so fast.
Welcome to FUD! Our son was diagnosed at 2yo and many of the things you may encounter, you may find posts on as I was very confused after his diagnosis. There is so much going on on the little bodies as has been mentioned and combined with what seems like honeymoon stage, it’s so hard to NOT experience roller coasters. As soon as you think you have something figured out, you are reminded that the only thing with toddlers that remains constant, is change. Liam was in honeymoon stage for about 2 YEARS after diagnosis which made administering insulin very difficult. their size at 2, even .05 insulin can make them go low!
I would agree with the others on the causes of your daughters BG swings and welcome to FUD! If there is anything I can do to help please reach out! Liam is now 9 and we have a good handle on things for the most part, but we still have our good days and bad. Unless I see patterns, I change nothing.
Oh, that makes sense! I suppose I’ll be seeing a lot of this over the years considering she still has a lot of growing to do. But, it helps to have an idea of why it’s happening. Thank you for your input!
How true is that. I keep saying that I feel like I’m doing improv. Thank you so much for the warm welcome. I will be scouring the posts to gather all the advice and tid bits I can find.
I know it is early for you still to be piecing it all together, but do you know much yet about what the alpha cells and the beta cells do in response to blood sugar?
You mentioned it in your post above, so perhaps you already know about how the body responds to high or low blood sugar.
As a newly diagnosed T1, her alpha and beta cells can still be partly functional. So after she eats, her body might put out a little insulin (beta cells), and then the alpha cells over-compensate. And the combination of what her alpha cells did, and her dinner, make it too much for the beta cells to cover.
This is where it takes time to try different things. Like maybe eating a little earlier might be one thing to try.
You mentioned 1 unit of Lantus was causing her to go low. You might consider doing a 1/2 unit of Lantus, or a smaller amount. If you are using syringes, you can try a 1/2 unit. Or you can even dilute it and dose much smaller if you want.
I can point you to some threads that detail that.
It does seem like the dysfunction is occurring with the alpha cells. I believe that’s also why she still experiences lows without taking any insulin. She doesn’t have any islet cell autoantibodies, but she was positive for GAD autoantibodies and from what I’ve read those can affect the alpha cells ability to produce glucagon effectively. Does that sound right?
I asked her endo about a half unit of lantus, but she won’t approve me giving her anything unless she’s maintaining a BG above 180 all day. It honestly sounds insane to me. But, I’m not a doctor.
I’m not sure I can change the timing of her meals, unfortunately. I wonder if there’s something I can do from a dietary standpoint? There seems to be a wide array of “best” approaches for diabetic diets. It’s a bit overwhelming! And by a bit, I mean very.
In our sons case , the Endos were quite ok letting Liam be above 250 all day. To them, the immediate “liability” associated with hypoglycemia is their only concern. It’s why we stopped asking for approval for the decisions we made, after the first month or two. They didn’t care about hyperglycemia and the long term effects of it. As parents, we care about that! 180 isn’t horrible but you seem like me…very interested in learning and doing the right thing for your daughter for her short AND long term health. So, now our endo writes our prescriptions, that’s pretty much it…when it comes to changing settings, administering insulin, etc, we stopped asking for permission. It was a couple months after his diagnosis when I saw they didn’t care if he walked around high all day and night. It’s why I helped co-found FUD…to get input from people I know and trust and who live with T1D and provide all the info and help needed to be successful.
The resources here have made us not only super successful in T1D management, but also lowered the stress levels.
Ugh, I can clearly see that mentality in my endo’s approach. Objectively, I know that her advice is not in my daughter’s best interest more often than not.
The problem is that I’m also terrified of the lows. I get all the physical symptoms of panic every time a low alert goes off. Certainly dealing with some ptsd from diagnosis and our picu stay.
We experience them fairly regularly now. I’m afraid of what they would look like if we went back to using insulin right now.
Yes, I remember going through that as well. I still worry about lows, but not as much as I used too…hearing stories from old timers like @Eric and @Richard157 about how they didn’t have any of our fancy tech and they’re still kicking, makes me breathe a little easier. Richard has been living with T1D, I believe over 75 years? You should read some of his WONDERFUL posts packed full of advise and widsom that you can only have after living with T1D for so long.
Our #1 goal for Liam is this…be IN RANGE as much as possible…if we go high, we don’t sweat it. If we go low, we don’t sweat it. The GOAL is to “get in and get out” ASAP, from BOTH of those scenarios…once you start pumping and using a CGM it gets MUCH EASIER…I didn’t ever sleep before Liam was using a CGM…as he slept, I just did finger sticks every 30 minutes to make sure “he was alive.” Those were horrible days that I wouldn’t wish on my worst enemy. But CGM and pump made our quality of life SO much better. Alarms/alerts worked for a while, then I had to move to “SugarMate” which calls me in the middle of the night if he’s low or going low (phonecalls are the only thing I wake up too now as I’m “alert deaf” after living with them for so many years.
Anyway, what I’m saying is…YES, most certain lows are something to be concerned about, BUT as long as you know she’s gotten treatment (aka - eaten some sugar pills or whatever), just give her time to come back up. Our goal is 15 minutes “in and out” from both highs and lows although it’s not always that fast…but that’s our goal.
I honestly can’t imagine going back to doing this without a CGM, though it does drive me insane sometimes. We only had to manage this without one for about two months and I did not sleep at all.
She comes out of lows very quickly, within 5 minutes most times. And usually, with very little correction. I almost never use juice. Just some fruit and protein. I really shouldn’t be complaining as I know we have it easy right now. I sure hope my nerves settle before she becomes fully insulin dependent.
Thank you so much for the reassuring words. I’m so glad to have found this space, as I’m sure I will be here seeking advice many, many times in the future.
In some ways, honeymoon is more difficult than when it goes fully away. Why do I say that? Because you can’t “predict” what’s going to go on with her body during honeymoon phase because sometimes she’ll produce a little insulin, sometimes a lot, and it’s always changing…so you can’t make any firm settings that won’t change. Once she’s no longer producing insulin AT ALL, at least you’ll be able to know that you can create settings that you are going to be able to use regularly, until she grows out of them.
So, I believe we are actually having a very predictable honeymoon phase as far as they go. Her patterns are obvious, with her numbers being nearly the same at different points in the day with maybe a 10-15 point difference. The only time that they change is when she catches a cold and I’ve even begun to anticipate what that’s going to look like. But, try as I might, I still can’t seem to get in front of it some days. I think that maybe I’m just not experienced enough yet.
As I said early on in this thread, she’s in range 98% of the time. Average glucose of 110 with a standard deviation of 25, according to the clarity app. Of course I’m hyper-focused on these high numbers though. Even with them only accounting for 1-2% of her day. I probably need a therapist! Haha