Questions about 4 year old with pre diabetes diagnosis

My son is 4 years old, not overweight and very active. His pediatrician checked his sugar at his well visit and it was 189 (he also was upset earlier because he had shots). My husband and I checked his sugar in the morning after he was fasting and it was 103. We were told he has pre diabetes and that it would eventually be type 2 if we didn't change his diet. He is scheduled to be tested again with a fasting test at the end of the month. I called to see if they would order a HA1c and they told me it would be negative since he doesn't have diabetes. I'm not sure how they can know that but I decided to just change his diet as they said and wait until the end of the month. I also asked since he is so young and doesn't fit the typical criteria for type 2 could it be type 1 in a very early stage. They told me definitely not type 1. Can they even know this based off 1 finger prick in the office and 1 fasting check at home? How elevated could his blood sugar rise if he was upset? My other concern is that if we change his diet from what he typically eats won't that possibly make him test negative? Then if he goes back to his normal diet, won't his sugars go back up? This has been extremely stressful on me. My biggest fear is an early onset of type 1 and they just happened to catch it very early before having symptoms... maybe this isn't possible I don't know. They only way I can see a HA1c being negative is if it's early onset. Any insight? Thanks!

Well Ive got a few thoughts.

First, at least from youve written, he's only had ONE high BG test. Is that correct? One test in the office isnt conclusive, and there *could* be many reasons behind that 189 reading. For example, he had juice or soda or something on his fingers when he was tested. You need more tests.

If further testing reveals high BG, my advice is you need to see an endocrinologist ASAP. There is no negative test on A1C. Its a number. And that number could reveal an issue.

My advice is do some random testing over the next few days and see what the numbers are. And make sure his hands are clean :)

As another has already post A1c is not a positive or negative - it is a number that can be within the normal range or outside the normal range. Also there are blood tests that can be done to confirm whether the diabetes is type 1 or 2.

You can always ask the pediatrician for a referral to endocrinologist who may be more knowledgeable and better able to answer your questions. I stuck with my general doctor for years thinking he knew about diabetes and it wasn't until I saw an endo that I realized my primary was completely wrong about my diagnosis and treatment (told me I couldn't be a type 1 and it had to be type 2 because I was 22 and too old to get 1 - wrong.

Doctors don't know everything and I would agree with you that they can't possibly diagnose diabetes, or the type of diabetes off of 1 finger stick

I would find a child endocrinologist. His blood sugars could be secondary to something else going on - 189 is pretty high for a child - even if he drank juice or ate a bunch of candy.

He should definitely be tested further to rule out type one or 2 diabetes.

Susan-thats assuming his BG actually WAS 189. My comment about juice or candy was referring to it being on his finger before the test.

Perhaps - but with a child I would want to absolutely be sure with a regular blood test. There are too many horror stories of kids' type one being missed and dismissed.

I would assume - that the doctors office used an alcohol wipe on his finger before doing the test.

The office did use an alcohol wipe. It had been over 3 hours since he ate or drank anything. When he ate lunch he had a little bit of Gatorade (my husband said just a sip) and a peanut butter and jelly sandwich. He is terrified of needles and was very upset when his test was done. The one in the morning took a lot of talking him into which he still was upset when we did it.

Depending on his test at the end of the month, I'm going to ask for a referral. At the very least it could confirm a pre diabetes diagnosis unless this is new onset right?

I would love to test him but he is so afraid. Yes, just one high BG test and he was very upset. Could this spike his levels that much? They did wipe his finger so I'm pretty sure it was clean. He ate 3 hours prior to the test... I want to see an endocrinologist but I don't know if I should go soon or wait until he is retested at the end of the month.

Do you think it makes sense to change his diet before they really know what's going on? He isn't really a sweets eater... example would be he would pick fruit over chocolate.

I'm not a parent of a T1, but based upon what you've said and my own experience as a T1, I would go to the endo sooner rather than later. I would not trust the pediatrician who thinks that, simply because your tiny tot is not in some sort of DKA distress, they can know with certainty he is not a Type 1. I would want to take him to an endo who knows kids and how they might present and knows everything that should be tested. He's just a little guy and the idea that he somehow needs to change what he's eating now in order to avoid T2 seems a little crazy to me.

Healthy eating is never bad… But in my opinion, I wouldnt put him on a too strict diet, because type 1 diabetes, which i personally assume would be the most likeliest diagnosis for your son if he actually has diabetes, can never be prevented no matter how healthy you eat.
until further bloodwork is done, i would say keep him away from regular sodas, and just watch out for symptoms like tiredness, weight loss, immense thirst and frequent use of the bathroom, and also nausea/vomiting. if any of those happens, dont hesitate to go to a doctor immediately!
good luck on your journey and keep us posted!
hugs SC

Pre-diabetes can be pre Type 1 diabetes, and most likely is in a young, active child. Yes, Type 1 can be caught early. I am not saying he has Type 1, but a pediatric endocrinologist should be able to help you.

That's what I was thinking... Thanks I will research pediatric endocrinologists.

Thanks everyone! I'll keep you posted!

Like JMHNCY, I also stuck with a doofus of a doctor for years because I thought doctors were doctors and they all knew the same stuff....

A pediatrician, even a good friendly one, is a specialist in general kid stuff.
Diabetes of any kind, at any stage, isn't general kid stuff.
Especially based on the absurd things your pediatrician has already said, clearly this is not the office to be dealing with such a thing, even if it turns out there isn't anything to be dealt with. (My opinion here, because I am also not a pediatric endocrinologist, but changing his diet specifically to treat a possible T2 (or T1) diagnosis is not going to serve a purpose at this point, and continuing to check his BG at home isn't going to do much either because you still need an expert to review readings over time and make useful analysis, since there isn't a lot in the way of one-size-fits-all BG limits, especially when kids are involved).

Go find an endo now (bonus points if you can find a pediatric endo), don't wait until the end of the month, or another test, and don't even set up an appointment, just call and tell them your story and see what they say.

As a general answer though, and not to scare or imply anything about your current situation, T1 can definitely be caught before its in full-blown DKA or presenting with all the usual symptoms. The happy side of that though is that if there is something to find, and its found early, there's more options to treat or manage, not to mention some cool studies about post-poning or preventing for as long as possible.

Good luck!

Thanks!

So I was able to talk my little guy into giving me a blood sugar. He agreed only if he was asleep. He snacked on pretzels before bed and had a glass of milk. I checked him about an hour later after he fell asleep and his sugar was 77. Two hours later it was 75. Those seem like good numbers to me. I tried seeing what his fasting was this morning and he woke up panicking so I didn't try it.

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Pretzels and milk are very carby, so it sounds like positive news!

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Look, I wouldn't wait to consult an Endo. What is there to lose? Some money and time?

Put bluntly, you have access to the most expert people on the planet regarding diabetes right here. Experienced diabetics. Yes, doctors and scientists will know more about the science, but as we diabetics have all discovered, they really aren't as expert in how to interpret, manage, and deal with this condition.

While Dan gives sound advice, it will be difficult to near impossible to gather finger stick data from a 4 year old. I'd say going through the great effort of habituating that with a 4 year old -- and the fear and pain they experience -- is not worth it without a diabetes diagnosis.

I'm a parent. Mine are 16 and 18 now. But I remember the age of 4 well. If it were me, I'd take him to an Endo, have the battery of antibody tests done, and go from there.

He's just a little guy and the idea that he somehow needs to change what he's eating now in order to avoid T2 seems a little crazy to me

More than crazy... as we all know here, WRONG, and possibly dangerously so.