Not feeling her highs

So when I read stories of adult diabetics on this forum, everyone is always talking about how awful they feel when their bg goes up. So now I’m wondering, why doesn’t my 8 year old feel it when her bg is high? She’ll can be in the mid 20’s (20 mmol/360+ mg) and she’ll just keeps on trucking. And so that leaves it up to me and her siblings to notice her behaviour change - she can become mean and argumentative or just wild and then we check her blood and sure enough, it’s high!

Obviously we are working on having it never happen in the first place, but it does happen at least a few times a week and I just wish she would notice it and feel it, so we could catch it earlier.

Any thoughts?

Note - I am more sensitive to highs than most people (I get terrible headaches); however, from what I’ve heard, it is quite common for people not to feel highs, especially short-term ones. Early on, I did not feel highs at all; however, after spending more time “in range” I started having clear indications that my BG was high. I wear a CGM (consinuous glucose monitor) and my “headaches” are even more accurate than my CGM at detecting highs!

I don’t think this is uncommon. I was diagnosed at age 9 and for years didn’t feel highs or lows. I could walk around at 1.2 mmol/L and have no idea I was low until it got so bad that someone noticed. As an adult, I pay a lot more attention to how my body is feeling, and yet I still don’t feel highs or lows easily, typically I hae to be quite far out of range before I’ll notice any symptoms. Spending more time in range can help, but I also have a theory that those diagnosed as kids have bodies that are more used to wide fluctuations than those who had normal BG their entire life until they were diagnosed as adults, so maybe this is why it’s harder to feel highs and lows.

My understanding is that PWD as a group (i.e. ignoring the differences based on age) tend to “feel” lows more often than highs (unless, of course, the high is very high for an extended period of time). A large part of the solution is to catch the highs before they get too high and/or continue too long = get a CGM.

For me, it depends on my recent trends. If I’ve been running high, I won’t feel high (love D lingo…), and if I’ve been running low, I won’t feel low. My body seems to get used to numbers pretty quick. Now, on a day where I’ve been running lower, and then go high, I will fell awful, and vise versa. Also, if I run his for a long time (usually this happens overnight) I will feel like I have a terrible hangover.

My aunt was a noncompliant type 2 diabetic. She was always horribly high, and did not feel any symptoms. On multiple occasions she was sent from her GP to the ER due to BG’s in the 600-700 range. When her sugar dropped below 200, she felt low. Seems to be relative to recent numbers and trends.

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Agree with MissMargie - but also highs tend to make me feel annoyed, and distracted - and it may take me a while to work out why i am feeling annoyed and distracted - sometimes it’s not blood sugar at all.
I think it’s like for anyone - sometimes you feel ‘off’ and there is a clear reason (you’re getting a cold, a work project isn’t working out as it should, the weather, whatever) and being high (or low) is just another variable. Sometimes though you just feel ‘off’ and don’t know why.
For kids it just takes them longer to identify a) that there is a mood there, and b) what is causing it. Young kids particularly just can’t do that level of abstract self-analysis to the same degree that adults can - yet. Some parents i have spoken to talk of developing a language with their children to help them (kind of like potty training - the child needs to learn to monitor what their body is telling them, and then work out how to act on it - maybe don’t use that analogy with your nine year old, she might be offended :slight_smile: ).

I don’t feel highs unless I am not getting insulin (pump problem) and am developing ketones. If I am at 300 for overeating or whatever, I feel perfectly fine. If I am at 300 because I forgot to hook up my pump and I am getting no insulin, I feel horrible.

I have never felt bad with highs and have always been amazed by people who say that they can feel with they go above 140.

[quote]If I am at 300 for overeating or whatever, I feel perfectly fine. If I
am at 300 because I forgot to hook up my pump and I am getting no
insulin, I feel horrible. [/quote]

I agree. A high from no insulin feels totally different to me from a high from miscalculating a meal. Before I had a Dexcom, I could forget to bolus for a meal and not notice until I tested at two hours and was high. But if my pump is not delivering, I’ll often start to feel sick even before my blood sugar is all that high.

I’ve also always been amazed at people who say they feel high at 140 or 150.

Like others, it’s not uncommon to miss a high because I don’t feel it. For your daughter, it’s just an example of how her diabetes is hers, not anyone else’s. It could also be a function of how long she’s been diabetic and if she typically runs a bit higher BGs, then goes off into the 300s. She may be habituated to the high BG “feeling”, so it’s kinda normal for her.

As she spends more time in range, she may develop a better feel for when she’s high, but don’t hold your breath … sorry!

If possible, you might want to look at a CGM like the Dexcom with Share, or the Dexcom G5 that can report to an iPhone (Android in the future), or look at the CGM in the Cloud/NightScout #Wearenotwaiting. These are all methods that let you see what her BG is doing and how it is trending without having to completely rely on a finger-stick.

Thanks all - this has been really helpful and informative. And I’m glad to know she’s not the only one who doesn’t always feel her highs. And on another note I’ve only found ketones on her once in 3 years, and that was because of a site issue over-night where she wasn’t getting any insulin from her pump, so maybe she too feels differently from over-eating vs no insulin.

A CGM would be great and we were hoping to do one last spring, but we’ve resisted just because it’s another site, but we do have insurance coverage right now so I should start looking into it again.

Thanks again - this has been super helpful.

Jen, you’re much kinder to yourself than I am by saying “miscalculating a meal.” Most (not all!) of my stubborn highs are from totally bad decisions where I truly don’t think an “accurate bolus” is possible…

There is no magic wand here. Self awareness in ANY realm requires experience and maturity for certain. A child by definition does not have the skills, not yet at.least.

You also must be extremely,… extremely careful reallyely you do not assume thatrage, anger, whatever strong emotions do NOT retroactively mean, “high”. Might just be I’m angry, enraged, giddy, silly, and not automatically high. The problem is clear… it forbids normal emotions, everyday strong, passionate feelings.
So you gotta be careful… real careful. Otherwise you concern automatically indicates YOU are high… right!!! Just be careful with the assumption.

It doesn’t really surprise me that a young energetic kid wouldn’t feel highs. I really don’t fee highs either except sometimes I’ll notice that I feel more tired than I should… But even that isn’t conclusive by a long shot because I’ll often check and see that I’m actually just tired not elevated… Then again I consider anything over about 150 a high for me these days, so I guess it is all relative

I understand what you are saying about self-awareness - so thankful she can feel her lows. And have no fear - it’s not like I attribute all of her emotions to her blood sugar levels. But there is just something about her that I can sense when she is high - it is just a slight change in behavior and I dunno but even teachers at school have said they can tell. She’s must be very transparent. And I’d say I’ve been right predicting her highs about 9 our 10 times.

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I’ve had type I for over 40 years, but, must say I never feel them. Like another person said, I feel kind of bad if it is from an occlusion or something but not from food. And I hate hospitals, so I am glad I was never one who needed to go there from a high!

That’s great! In my opinion, it is extremely important to not let her D become the most important aspect of her or your lives. As many have already commented, it is very common not to feel highs, especially for kids. I can also understand your hesitations about CGM. For anyone who can independently manage her or his D, it is a fantastic tool. However, I would have mixed feelings about it if I had a young child with T1D. It is not just that it is yet another gadget attached. I think it would take some effort not to become overly concerned about continuous monitoring and every single high or low she may experience. If you have access to it, it is a matter of personal choice and attitude. If you want to hear more from parents who have experience with CGM, I would recommend you look at the Nightscout project, and their CGM in the Cloud facebook page - that community is very knowledgeable and supportive (and, in general, very enthusiastic about CGM). Best luck!

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My husband can often pick lows in me before i can… I think that is one of the things with diabetes - if I’m high or low, it’s sometimes the last thing i think of, exactly because i am high or low and they both kind of impair my reasoning.
You sound like you’re doing all the right things with your daughter… i cannot imagine how hard it is - i know i have a hard enough time trying to deal with ‘the D’ and i live in this body - trying to do that from the outside, and trying to work out what is going on in a child’s body, it must be even more difficult!