3 sons, all with A1cs between 5.7 and 6.5... when to see the doctor?

Parenting a D-Child New Child Dx
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This, I hope, is not really the right category for this question as none of my sons have been diagnosed. However, I couldn’t find a category that was right… a type 1 diabetic mom… with concerns for her non-diabetic children.

I’ve been looking on the internet for information about a1cs, which is ironic because I know quite a bit, but I’m trying to find information for my boys, 5, 7, and 13. Our pediatrician has told me to go ahead and test away, but that’s not easy advice to follow. I don’t want to, as a result of my own anxiety, create panic or paranoia, so although I’m willing to test them, I really am not willing to “test away”.

So here’s the rundown… My 13 year old has Celiac disease. Obvious red flag. He’s also been hospitalized for acute acidosis, which I was told was a diabetic event, without the diabetes. I’ve tested his blood sugar at random, and his fasting has always come in at JUST above the cut off. At random I’ve seen one number in the 220s. His a1cs have always ranged between 5.7 and 6.3. Tonight’s was a 5.7.

My 7 year old MIGHT have Celiac disease. We’re in the process of determining that. His a1c tonight was a 6.1.

My 5 year old, who has numb hands in the morning and has some pretty intense thirst issues, tonight had an a1c of a 6.5.

According to the internet, we’re all going to die because those symptoms match up perfectly with everything scary, BUT those a1cs ALSO, very seriously, fit into the “prediabetes” range. And actually, that 6.5 is a little bit more of a concern.

I don’t think I have 3 sons with pre-diabetes. I HOPE I don’t have 3 sons with pre-diabetes. But does anyone out there know what to do with these numbers?? I don’t want to be paranoid. I don’t want to be negligent. It’s a fine line there in between.

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I am so sorry. I know a little bit about that worry, and my daughter has never even had high numbers or symptoms. :slightly_frowning_face: I don’t have much to offer, not having a child diagnosed with d, but have you looked into antibody testing or something like TrialNet to keep an eye on it?

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You know, I feel better already. I have a friend who’s an educator, and she explained to me about children’s a1cs and how they’re diagnosed. I’ll definitely be following up with their pediatrician, but I can set aside “panic mode” for tonight. :grin: For now, at least. Until they do something else to freak me out.

You were very kind to respond. :slightly_smiling_face:

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My son was diagnosed at two years of age. He had very obvious (and classic) symptoms. Very thirsty no matter much he drank, soggy diapers thirty minutes after being changed, dehydrated, lethargic.

I have five other sons. I don’t think about diabetes at all with them. If they exhibit diabetes symptoms, I’ll address it. Won’t spend my time creating or imagining scenarios that don’t exist. To me, diabetes in children is very easy to recognize and it’s unmistakable.

We knew Liam has diabetes even before the pediatrician and even mentioned it… But was dismissed.

Those a1cs are typical/normal for kids without diabetes, I believe. I’d love that A1C for Liam. Close!

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What were the circumstances for the 220? Postprandial or fasting?

Being just above the cutoff is probably not a big deal because home meters have some margin for error.

The fasting numbers are the ones to watch.

How did you do the A1C? Home test?

I think the A1C numbers above 6.5 are worth keeping an eye on. How long has this been going on? Just one test?

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Hopefully they’re all seeing a doctor regularly to begin with and this concern should definitely be discussed… a single reading of 220 might be nothing, but it does warrant keeping an eye on…

I’d really also recommend signing up for trialnet. If they’re your biological children and you’re diagnosed with t1 it’ll annually (for free) test them for antibodies associated with diabetes. Just google diabetes trialnet and you’ll find the website and how to enroll. Not only will it alleviate or validate your concerns, but it’ll also help unravel the mysteries of type one diabetes for future generations.

Of course kids can become insulin resistant and develop t2 also, which wouldn’t give you any positive antibodies … but that’s typically only seen in very overweight, sedentary children with very poor diets… there’s always the exceptions though

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Thanks for the response. I really don’t worry MORE than one would given our crappy family history of crappy medical conditions. :slight_smile: But every now and then I get taken in, and that is what happened last night. I went looking for numbers that I didn’t know enough about, and when I found them, they scared me. I guess what I know about diabetes for myself just doesn’t translate to my non-diabetic offspring.

Speaking of offspring… you have 6 sons. And you’re still around to tell the tale. Amazing. :smiley:

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Postprandial.

Those are the ones always just above the cutoff. He usually lets me do a double fingerprick as I don’t ask him to do it very often.

Yes, it’s a home test, but I’ve always had great luck with these. I hear some people really have problems with their accuracy, but mine have never been more than .1 difference than a lab score, and I always do them on back to back days.

Just one, yes. He’s my 5 year old. I’ve never tested him before in any way, but I’ve been thinking about it for a while because of how thirsty he gets. Actually, it really is because of the fact he wakes up with numb hands. I’ve woken up with numb hands all of my life. It just made me nervous, but in reality, that may be a genetic thing rather than a diabetes thing.

Anyway, as usual, I’ve gotten very nice responses, yours included, and I’m back to thinking about their ninja kicks as the clear and present danger. :smiley:

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So… we’re in Trialnet. We’ve been in for probably 3 years. I, despite all evidence to the contrary, continue to worry. It’s a full time job all this worrying…

As far as type 2 goes, it’s not a concern at this time. I’ve got three very active boys who DO eat too much junky food from time to time but who eat a very good diet otherwise. And, yes, of course we visit the doctor regularly, but they don’t say things that put my mind at ease. Never have. My first child’s pediatrician told me when he was 2 that there were no tests to run and nothing to track. Her exact words were, “you’ll know when he enters the hospital in DKA”. Match that with our current pediatrician’s words, “you’re a diabetic, test away,” and what you have is, “Nicky, save your children. Test away.”

And this is why doctors should be more careful. :smiley:

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That was horrible advice. In my case it was a couple months of symptoms of excessive thirst and peeing. My parents didn’t know anything about diabetes, but they knew something wasn’t right. They had me checked by doctor before DKA.

I have NO doubt that you will recognize symptoms and take action when/if appropriate.

The thirst and excessive peeing is hard to miss. Although in my case, I tried to hide it from my parents, thinking I would be in trouble for not staying in bed. But they still noticed how tired I was, increased asking for seconds and weight loss.

And you have KNOWLEDGE, a BG meter and urine glucose/ketone strips, which my parents didn’t have.

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And a home a1c, which is what got me in trouble in the first place. :grin:

Thank you for your response. That is all very good stuff. Do you mind my asking, since you’re actually able to tell it from your own perspective, how old you were?? [quote=“MM2, post:10, topic:4143”]
The thirst and excessive peeing is hard to miss. Although in my case, I tried to hide it from my parents, thinking I would be in trouble for not staying in bed. But they still noticed how tired I was, increased asking for seconds and weight loss.
[/quote]

I’m 50/50 on what of these are symptoms of concern and which are symptoms of being 5. But again, thank you for your breakdown. It certainly makes it easier to track. And you’re absolutely right about the ketone strips, too… He is also a at random-vomiter, but I had never thought about testing for ketones.

I’ll put the a1c tests away, and keep all of these things in mind. Thank you again. :slightly_smiling_face:

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What age were you diagnosed at and how was it discovered?

I was diagnosed in 1965, age 5 1/2. Although I tried to hide the peeing, my mom thought I may have UTI. But also noticed weight loss (clothes not fitting), change in appetite (eating MORE), and being tired all the time (less interested in going out to play, napping in the afternoon).
Mom also said it seemed my face was sad and droopy looking. Very much a contrast to siblings and how I was just a couple months prior.

So my mom called the doctor for an appt. The doctor smelled my breath, and sent me directly to the hospital.

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Hi @Nickyghaleb, so one thing to consider with TrialNet is that if your child tested negative for all antibodies and is 5 years old or older, then they are pretty unlikely to subsequently develop T1D. Like, basically their odds of developing it go down to about 1 or 2 percent, and they are really unlikely to develop it in childhood. So if none of your kids have the antibodies yet, that’s a good sign they won’t be diagnosed at least anytime soon.

What they’ve found in the TEDDY study (The Environmental Determinants of Diabetes in the Young) is that most kids who develop T1D in childhood have antibodies before age 1. Doesn’t mean your kids are guaranteed not to get it, but the risk does go way down from what you’d assume if you hadn’t gotten those negative tests.

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Thank you for sharing your story. It definitely puts some things in perspective regarding my son’s symptoms, and I appreciate it.

Diagnosed in 1965… seems you’ve done a good job. :slight_smile:

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Thank you, @TiaG. That’s helpful information. I was very comfortable with trusting our TrialNet results, but I slipped somehow and let worry get the better of me. I’m late taking them this year, too, which although I understand that being late has no impact whatsoever on anything, maybe it’s what planted the worry seed.

Either way, I’ve pulled myself together. Next I’ll get their blood work appointments taken care of… :slight_smile:

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Thanks. Would be a different story if we didn’t have all the new tech gizmos we have now.!

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Hi. I see this post was from a month ago but I was wondering how things went with the blood work for your sons?

I also wanted to pass on another option if it hadn’t been explored yet…an OGTT! If trialnet hasn’t yet mentioned it to you, you may want to ask them about it.
When my non T1 (who was already a trialnet patient with negative antibodies) started getting some weird numbers, a couple times over 200, I contacted the endo and trialnet. Trialnet got him scheduled right away for an OGTT (this is the 2 hour Oral Glucose Tolerance Test). This gave us a much clearer picture of what was going on with him. So they took his fasting baseline number then gave him the high glucose drink then subsequently took readings at 30, 60, 90 and 120 minutes to see how the pancreas was able to deal with the carb load. During this testing they also run an A1C, check for antibodies and c-peptide. It is a very thorough test that helped us know what was going on AND gave us a baseline so that if he started to show other signs or symptoms down the road then we could tell if anything was progressing.

I’m most curious what turned up with your 5 year old. An A1C of 6.5 is equivalent to an average blood sugar of 140… definitely in diabetic range. :confounded:

I hope you’ve been able to find the proper channels to get the answers you need for your boys. I’m keeping my fingers crossed. :crossed_fingers: Please give us an update if you get a chance.

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If you don’t mind me asking, how did all of that testing went for him - as in, did it give any insight into why he was spiking despite negative antibodies? My daughter is starting to show higher post-prandial numbers (just under 200), but so far A1c/fasting numbers are normal, so we’re being referred to a pediatric endo. I had just gotten her TrialNet box in prior to this, so she hasn’t been tested for antibodies yet.

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Good questions! Ultimately, I have figured that it was caused by a virus. Shortly before this started he had had an unexplained fever for a few days then we started seeing some symptoms (kindergarten teacher sent home a note saying he was peeing a lot) and that’s when I started seeing the 200’s (and 50’s which was equally concerning to trialnet). Most of it regulated again after a few months and his A1C has stayed low and he’s still antibody negative. So, my guess was his body was fighting something viral that we couldn’t see on the outside. Just my theory.

But, since his dad and his brother are both T1 we keep him in the trialnet study. Not only is it good for the researchers to have the data but it helps us track his OGTT numbers and we could catch something early if it goes wonky. Sometimes people are dx even without having antibodies so they OGTT gives me another reassurance and data that we can compare year to year. The research nurse at trialnet has indicated that because his OGTT numbers don’t follow a typical pattern (fasting, then up then back down after 1 hours) that it’s one of the things they study to see what patterns happen in non T1’S that they still don’t understand (my son’s will sometimes go low after drinking then shoot up then go down and back up 🤷 not a typical curve but his numbers are still within a safe range).

I typed a lot but I’m not sure I answered your questions. :smile:

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@Nickyghaleb, I’m T1D, and have 4 kids, ranging from age 10 to age 17. I’ve periodically tested their blood sugars, but haven’t seen anything very concerning yet. I was diagnosed with T1D at age 28, with an A1C of 11.x. I wonder how long I was slipping into that state over time? I know the doctors say it isn’t supposed to happen that way, but I just wonder. I suspect it could have been slowly developing for years, and then finally crashed on me in about 3-6 months time.

If my kids were in that state (possible prediabetes), I think I’d move to a low carb diet for the whole family, in hopes to forestall the (possible) development of full blown diabetes. I’d still run an annual A1C just to keep an eye on it, though. And, maybe they won’t develop diabetes at all.