Toddler with signs of diabetes...negative for GAD, IAA, and IA2

Good afternoon everyone!

I am Type 1, going on 16 years now. I am 30 years old and my wife and I are concerned about my son Eli. He is 2 1/2 years old.

He has had some severe low blood sugars fasting. Upon consuming say, 10 to 15g of juice to “correct” he vomits profusely. We have been to the ER a few times.

We also have had issues with highs, fasted and at random times. some fasted around 120. Most concerning was today.

Fasted he was 91. 4 hours after breakfast (and playing at the park) he was 226! Breakfast only had about 10 to 20g carb. Changing his diaper a lot today, very high volume of urine.

the past 5 days he has had sugars 160 to 180, 3 to 5 hours after a meal with carbs.

I had the doctors check for for GAD, IAA, and IAS…all negative. They did run some GH, cortisol tests as well…we are perplexed so are the doctors.

I am reading that some may not test positive for anti-bodies but can still be type one. It seems like it comes and goes. We have been dealing with this for 6 months now. It seems lately it is almost a daily occurence.

He complains that he feels sick, and we check his sugar and it is out of range.

I appreciate any feedback! We have an appt with an endo next week to consider putting a CGM on him…The doctor feels this isn’t diabetes becuase “this isn’t how diabetes typically presents itself and he has negative results for anti-bodies”

I encourage you to use the TuD search (the magnifying glass icon at the top right portion of your screen) and search for member “Melitta.” @Melitta has written extensively about misdiagnosis of adults with slow onset T1D. This often involves discussing the blood antibody test. I understand that there are five blood tests that can be run. I hope she can stop in on this thread and provide some assistance. We also have other members who have gone through T1D diagnosis in a toddler.

The other symptoms you report are classic type 1 diabetes diagnosis symptoms.

Good luck!

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Have you run liver function tests?

Yes. He had digestive issues before this, they looked at his liver and his
liver, kidneys and all is good.

Even did ultra sounds to measure the organs, nothing out of the norm.

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I would suggest that you have this escalated to some Pediatric Specialist at a Children’s Hospital.
Which you may already be at from the sounds of it.

But is there a different facility or different specialist doctor that you can have take a look who may have a different insight?

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Here is a link to a Diabetes Forecast article that explains all the autoantibody testing. It is succinct and good. Before there were autoantibody tests, doctors were able to diagnose children with Type 1, and of course a small percentage of people with Type 1 don’t display autoantibodies. Has the doctor done a fasting BG? Also, I know that adults early in the Type 1 process will have reactive hypos, not sure about children. Best of luck, this sounds like a challenging situation, and as you know we have to be our own (or our children’s) best advocates in the medical system.