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There IS a condition called Hypoglycemia that ISN’T diabetes-- where your pancreas produces too much insulin.

You’re doing all the right things to keep an eye on it. I hop you figure it out quick for HIS sake.

There have been occasional discussions through the Type 1 community where some of us have memories of what must have been hypoglycemia years before being diagnosed with diabetes. I have memories of late afternoon sweating, hunger, and shakiness in high school and college that in retrospect I would guess was hypoglycemia. I was diagnosed with Type 1 at age 24 with a relatively fast onset. At the same time I wonder if I had blood glucose abnormalities throughout much of my life. I was diagnosed in 1976 before home BG monitoring so there would have been no way to track my BG.

If he is dealing with reactive hypoglycemia, usually a lowish-carb Diet is indicated. If he is in the early stages of diabetes, a lowish-carb diet is an okay idea also.

Does your child have a parent, grandparent, or sibling with Type 1 diabetes? If so, he would be eligible to participate in TrialNet with ultra-sensitive blood tests that can show relevant autoantibodies years before Type 1 becomes reliably symptomatic.

https://www.trialnet.org

Most of the numbers you mention could be perfectly normal, but you’re right not to ignore your son’s symptoms.

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I know you think that you are confused about something, but you seem to really understand how diabetes works. It’s goofy. One thing that happens to me is that if I have a significant drop in BG, say 300 to 100, in a short period of time, I might get symptoms of low BG (even though its not). Also, if I haven’t eaten in a while and start feeling weak and cranky, I might feel low, even though its not.

If his BG is not low, than its not low. But, remember that there is naturally a 20% variability between what the machine reads and what his BG ACTUALLY is, so if in doubt, bump him up a little. You seem pretty proactive and like a great candidate for a Dexcom. If you get the new G5 and use nightscout to communicate with your cell phone, you will not have to check his blood so frequently. It might be ‘built in’ to the newest version of dexcom. I use the old version. Someone on here will know. http://www.nightscout.info/
Dexcom info click here

I want to echo the thought of Laddie.

Here is the full eligibility for trialnet.

Between the ages of 1 and 45 and have a parent, brother/sister, or child with T1D (ages 3-45 in the United Kingdom)

Between the ages of 1 and 20 and have an aunt/uncle, cousin, grandparent, niece/nephew, or half-brother/sister with T1D (ages 3-20 in the United Kingdom)

https://www.trialnet.org/our-research/risk-screening

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Oooops, maybe he’s not even diabetic. Sorry. I just assumed.

I am so sorry you are having another worry thrown into the always present parent worry. But as the parent , you know when something is not right and sometimes must push. I agree that if you know something is wrong, you must have it looked into and it sounds like you are.
My suggestion is something the endo office can and probably should have offered. That is the Libre Pro. It is only offered through a doctors office and the readings are blind. The patient wears it for a week or two and than it goes back to the office where they download the readings. It’s just the the one being used in Europe and only available through medical offices. But it’s a CGM. It would show the doctor what the blood sugars are looking like all the time. And if you keep good records, they can see if there is a larger than normal spike after meals or if the blood sugars are dropping overnight. I hope they can get him hooked up to one. It can be very in lightning to see how the blood sugar react to things.
And as stated before that diabetes doesn’t always follow the rules, it happens to people who do not have diabetes. Sometimes their blood sugars go out of “normal” range. The key thing for them, it falls in line pretty quickly. Kinda fun to see someone who doesn’t have diabetes wear a CGM.
Good luck and my hope and prayers are just a kid being a kid, but trust your instincts!

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Update:

Thank you for all of your replies! All of the blood work for celiac disease was negative, so that’s a huge relief.

He felt really good, no symptoms, for almost a week.

Then a few nights ago he slept away, ate really healthy, well balanced meals, and when he woke up he asked to have his blood sugar checked.
8am woke up, sat down to breakfast
8:10 blood sugar 167
9:20 blood sugar 85
The person who checked it is super knowledgable in diabetes, so I know his hands would have been cleaned throughly, and I don’t think breakfast is going to make his blood sugar immediately rise, and when it should have been higher, it was low. It doesn’t make sense to me!

He went right from there to someone else’s house for the day. Lots of McDonalds, fruit snacks, that type of food. Came home in the evening, felt awful

5:30 last ate
9:30pm blood sugar 137
11pm blood sugar 119
12pm blood sugar 102

It was 95 fasting this morning, which is fine I think?

I think I’m going to email this to the endos office in the morning and see what they think?
So far he hasn’t had any episodes that they think are from hypoglycemia, which is great for him, but we have a stack of labs that have to be done when his blood sugar is low.

I wonder if the endo will change what they are looking for if he’s also having high numbers. If anyone knows what number ranges are for nondiabetic children (he just turned 5) that would be great to have. I keep reading 100-180 and then will look somewhere else and read that it shouldn’t ever be above 100. I imagine the truth is somewhere in between that!

I would consider this particular piece to be completely bogus as it stands and suggest that you entirely disregard this like you never saw it. Maybe there was more context around the source or something but as a stand-alone - 100% no.

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Hmmm, how many carbs is he getting and was there juice perhaps? simple carbs on their own can raise me pretty fast, especially orange juice or apple…I use those for lows… Also the rise and fall depends upon the mix of protein and carb and fiber, both protein and fiber slow down digestion and prevent spikes… not that you want to low carb a little guy but it may help the endo understand what’s going on if you at least food log…