This may be long winded so please bear with me. I’m looking for insight from experienced individuals as I’m new to all of this. 3.5 weeks ago my 4 year old slept for 16 hours, very unusual and uncharacteristic. Upon waking up she was very lethargic and confused, and thirsty. I took her to our local ER against my better judgement. They did a urinalysis to rule out UTI, she did not have one, however she had large volume ketones and protein in her urine. I asked them to check her BG and they would not. Fast forward a few hours, I can’t shake the feeling that we need to check her BG. I panic bought a glucometer and sure enough, she was at 247. I get her to the children’s hospital where she’s now at 278. Urinalysis at Children’s is still showing ketones as well as glucose now. Her a1c was normal, all her labs looked “normal”. They did do antibody testing which resulted several days later and she was positive for Zinc Transporter 8 Antibody, her value was 100.1 and the normal range is less than 15. We’ve followed up with endo and have basically been told it’s just a waiting game, they believe she is t1, and it could be months or even a year before she needs insulin. I guess im just curious if anyone is familiar with only being positive for the zinc transporter antibody in their children. And if anyone has experience with catching their children’s diabetes so early?
I’m afraid I don’t know about the antibodies, but I believe that it is no longer the case that the onset of Type 1 is a waiting game. There’s an FDA approved drug that delays onset (Teplimuzab) and there may be other interventions. I would try contacting your local chapter of Breakthrough T1 (formerly JDRF) and perhaps seek out a referral to another endocrinologist or diabetes clinic. You could also look up Trialnet which is a project to delay or prevent onset.
Thank you for responding! Our endo did tell us about something along those lines but that’s it’s only approved for children 8 and older 
One positive T1D autoantibody indicates increased risk for Type 1 Diabetes but isn’t conclusive. Combined with the high glucose tests Monitoring by a doctor is called for. I thought about Teplimuzab too but the age cut off… Monitoring consists of testing autoantibodies and blood sugar every 6 to 12 months per BreakthroughT1D
Here is the Trialnet site @Tnyc mentioned in case cost is an issue or you want your child’s results to benefit T1D screening research. https://www.trialnet.org/
Did the endo suggest any home glucose monitoring? Did they schedule a follow up appointment before you left?
At the bottom of this webpage about the newly diagnosed, there’s a link regarding clinical trails:
With such a young child, it may be too much to contemplate right now, but you could keep it in mind for later.
I wish you and your daughter the best. It must be super stressful.
My heart goes out to you! I am a grandfather to a 2 year-old granddaughter and can only imagine what you’re going through. I was diagnosed T1D 41 years ago.
You have not mentioned the C-Peptide blood test. This accurately measures the amount of insulin that the pancreas produces. A typical T1D measures very low. Your daughter, especially if caught early in presentation, may have levels in the “normal” range. It’s a simple and inexpensive way to add to your and your doctor’s understanding of what’s going on.
Sleeping longer than normal and waking confused and thirsty could very well be caused by sustained high blood sugars. Her subsequent finger stick high blood glucose numbers confirm this.
You didn’t mention the child’s weight. Did she lose significant weight at this time? This symptom can be very dramatic in a child. Large ketones in the urine is consistent with high and sustained high blood sugar.
Detecting high autoantibodies on any of several tests also confirms T1D.
Hyperglycemia for extended periods is not innocent. Your daughter’s small size and unknown status regarding a “honeymoon” stage makes clinical intervention tricky. This accounts for the doctor’s timidity and not wanting to intervene with external insulin. It may even be justified under the “first, do no harm” philosophy.
If I were the parent, I would be tempted to at least put a CGM on the child to learn more about what’s happening metabolically. Knowledge is power and I believe you would be smart to gain info that a CGM would expose.
Good luck!
This happens to young kids at the beginning of type 1. Back when I was diagnosed no one really knew it until it was already acute.
The reality is that type one starts a nd she loses some islet cells and depending on her carbohydrates her body got overwhelmed and couldn’t get enough insulin to cover it.
Thats why she had ketones and glucocose.
But early on she can recover and not need insulin if you restrict carbs esp the sugary processed ones.
It can take years to need insulin if he diet is managed.
The positive antibody test is the clincher and it tells you that her pancreas is under attack and will eventually fail completely.
If it were me, I would get her a cgm and keep an eye on it, if she sugars are going over 180 regularly, she will need insulin.
It’s not just dangerous with regard to ketones, but also high sugar causes damage to every organ and arteries. So I wouldn’t allow her to walk around with high sugars
Cgm data will definitely help to clue you into know when she needs insulin.
I was diagnosed with some insulin production still intact and I was in DKA. After starting insulin my body bounced back a while, still making insulin for a year, and I could go a few days with no insulin, but then needing it for days or a week.
After a year my cpeptide was close to zero and I was on insulin from that point on.
When your body makes some insulin, it’s actually more difficult to predict what your blood sugar will be after meals, so it can be a bit chaotic and difficult to treat.
As she loses islet function and gets to understand her disease and learn how to dose insulin, she will level off and be just like the rest of us. Day to day managing it for the rest of her life.
These days it can be a full no complication free life.
I’m 38 years into it and so far almost no complications.
Would a trial for use in younger children take your daughter? This is so important!