Continued worries with my toddler

Five weeks ago I picked up a couple of higher levels in my 20 month old (150s) - these were soon after eating, not two hours or even one hour. Anyway as I am type 1 and my dad is type 1 I was obviously concerned.
My dr wasn’t worried and just said to do a fasting blood glucose which was fine as long as below 7mmol (obviously this isn’t true but never mind)
Her fasting is usually around 4.6-4.9mmol (82-88) but never lower.
I’ve continued to keep a close eye on her by checking her just randomly every couple of days. I haven’t picked up any more high levels but she’s a toddler and is living on air at the moment. The most carb she consumes at once is about 40g! Most of her levels have been in the 90s after not eating for two hours and around 120-125 an hour after eating.

My concern is that a) what caused those elevated sugars a few weeks back and b) she’s barely eating at the minute (despite being a good weight) so that could well be masking a problem and c) if some people are to be believed - dr Bernstein is one - then all her levels are too high for a child her age who he states should be in the 60s and 70s. She is NEVER in the 60s and only rarely in the 70s.

The dr won’t do anything else at the moment. We are in the U.K. and I’ve found them to basically dismiss the idea she may be headed towards type 1 as they told me children this age basically never get it. Which is also wrong. So I don’t have a huge amount of confidence in them but they wouldn’t refer for GAD testing or for hbA1c or anything.

My question is do I need to keep checking her? Or should I just check her once a week maybe unless she develops symptoms? My worry is that if she is largely running in the mid 90s in the day now (5.3ish) and that’s with not eating much would we see much higher blood sugars if she were eating a lot more carbs? I think in an entire day she maybe eats 100g of carbohydrate.

As you can see I’m very worried even though I know really that there is nothing I can do to change the outcome.

Personally I would not be concerned with a 150 soon after eating. You discussed it with your Doc and they also were not concerned. If you are still not feeling good perhaps you could get a second opinion from a different Doctor.


BG machines have a 20% variance. BG readings off a home machine ARE NOT precise enough to know the difference between 70 and 80 BG. If it makes you feel better to test once a week, go ahead, but it seems unnecessary. If your toddler gets t1, there wont be any doubt about it. If you have a lot of stress surrounding the idea of your child getting t1, then I would definitely recommend seeing a psychologist to discuss that. t1 IS a stressful thing and it might be beneficial to talk about it. Parental fear is just one of those super stressful things.

True but you’d think sometimes they would show in the 70s?
I think I will get a second opinion but I could do with it being a specialist and not a GP.

Being a parent. A full time,forever constant worry. You are doing what every parent does. Worry and wonder. And I am not a medical professional but I will say as a Mom, I would just every once in awhile check. Don’t over do it. But I would suggest trying to find a clinical trial that is working with trying to prevent diabetes. That way you could help with research and your wonderful bundle of joy is being monitored throughout the trial. Good luck and pray, you don’t end up on the horribly hard road of a parent of a type 1 child. Don’t know how my parents did it!

Have you thought about using a UK private blood test service like this one? Additional information may help settle some of your concern. The A1c test costs 59 GBP while the C Peptide test is pricier at 159 GBP. (Sorry, I don’t have the money pound sign on my keyboard.)

I don’t know anything more about this service but maybe it could yield something useful for you in doing some further research.

Thanks - I’ve never heard of doing that before.
Maybe I will ring them and see if they will provide the service for a child too. There is a bmi clinic close to us so it looks like we could just go there.
I don’t really know what the c-peptide normal perimeters are but I could find that out easily enough.

My kids have higher than normal blood sugars… not diagnosable, yet, as anything. I was able to get antibody testing, which was all negative, and thus somewhat reassuring. I’ve got them both (the whole family actually, as I’m the diabetic), eating no added sugar and low carb.

We’re all doing fine with this way of eating for now. I bake to make low carb breads, pancakes and occasional treats. We’re on quarterly hba1c checks too. Their first was 5.9 and 5.5, on regular diet (pretty low carb mostly), then their second was 5.4 and 5.2, on strict low carb for about 3 months. Next test will be end of next week, then we see the pediatric endocrinologist again.

Would recommend you get a hba1c baseline. Check her from time to time (maybe after a carb heavy meal), without going overboard. And keep an eye out for any symptoms (in which case you’d be checking more frequently). Consider no added sugar / lower carb eating, as well.

Just be vigilant.

She’s kind of low carbing herself as she’s basically living on air at the moment!
She did eat tonight but maybe only 30 - 40g carbs which is a lot for her at the moment. She was 115 at 45minutes and 86 at an hour and a quarter. I left her alone then!

I think I would have to pay to get her an hbA1c as my dr won’t run one. The dr said they wouldn’t even be vaguely concerned until her fasting sugars were over 130 and non-fasting were into double figures.

How reliable is the anti body testing? If it’s negative does that mean no imminent risk?

Sorry we are in U.K. So by into double figures that translates to plus 180

Good idea!

I am not sure it really helps for you to check her before 2 hours have passed? I would probably check at meal + 2 hour to see if she is high. But I am pretty sure others have mentioned this already.

It is not 100% reliable. If they run all major tests, it is about 95% reliable, but will they? I am not sure how prescribing for tests works in the UK. One or two tests only would not give you enough coverage.

In the US, depending upon your relationship with your PCP, it would likely be possible to make sure that he/she prescribes a full panel (you would need 4 for a high level of confidence). Here is a wiki that describes each test with its confidence level:

95% of patients with Type 1 diabetes have at least one type of antibodies: “If four markers are measured—GADA, IA-2A, IAA, and ICA or ZnT8A—only 2–4% of patients are autoantibody negative, fewer than 10% have only one marker, and around 70% have three or four markers” (Bingley 2010). So, when using multiple antibodies as a criterion for diagnosis, the risk of a false negative is small (4%), although it exists

Her two hourly have always been fine.

However it doesn’t show if she’s spiked in between which I why I have checked at an hour. I find at an hour she’s usually as high as she will get. If the first phase insulin isn’t working properly it’s these that’ll go first. The two hourly could still be fine but you wouldn’t know if she’d been up in between.

My daughter, not yet diagnosed as diabetic, has the same pattern. She goes very high in the first hour (often 200 or more), but will be down to less worrisome levels by 2 hours.

I saw her patterns by getting her to wear a Freestyle Libre for a few weeks. It was really useful. Then we implemented a low carb diet (quite strict), and all her numbers came down dramatically. Will repeat that exercise again later this year to see if there are any changes.

The spikes my daughter had seemed to only last a few minutes - it’d be 150 and then ten minutes later it’d be 120 etc. But I know it isn’t normal to spike EVER so can only assume she is on the type 1 path. If she eats something like pizza she goes do about 130 and it often stays there for an hour before dropping down again. The 150s were with fast acting foods and it’s happened about 4 or 5 times over a couple of months.
I’m going to try the anti inflammatory diet I think as well as high vitamin D and omega 3. Can’t do any harm. Won’t prevent it I realise but might delay it.

If I spoke with my Ped about it and if it was my child, I really would not be concerned. This DOES sound normal to me. I have personally seen small BG rises (ie - 120 ~ 150) as you describe in non-T1 children after eating.


@Bethshine82 , I agree with @Tim35 when he says:

@Tim35 and I are both parents of T1s, so we tend to worry about our kids more than we would worry about ourselves: our threshold for concern is low. Yet, in your case, we both think that what you are seeing is quite possibly normal. I sometimes see the patterns you describe in my other child who is not a T1 and is very unlikely to become one.

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Thank you. That is somewhat reassuring. I can’t decide whether I’m experiencing mother’s intuition or just high anxiety!

I’ve read all that Bernstein stuff that says 83 is the perfect number etc. My daughter is only ever that level in the morning that I’ve seen and even then she tends towards higher 80s numbers.
Some people say that children should run between about 70 and 90 all the time. She definitely doesn’t do that either.
It is hard to know at the moment as she’s going through a phase of eating so little that her blood sugars are bound to not be too high.

Thank you again for your experiences. Maybe what I’ve found isn’t as abnormal as I feared.

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It is pretty hard to make out the difference, isn’t it? We parents see subtleties that others, however well-intentioned they are, do not.

I truly hope for you it is high anxiety! And it looks like it is – but we never can be sure :frowning: Wishing you the best of luck with this. I hope that somehow you can find serenity, and mostly, that your daughter will not be diagnosed.

Thank you.
I’ve been so worried about her since she was born that I can no longer tell the difference.

Tonight she actually ate! She had about 35g carb - including a small ice cream after. At 45 minutes she is 106.
Does that seem a little high? Would you expect that much of a rise with only a small amount of carbs?

At 45 minutes, not to me :slight_smile: