I posted originally in April in regards to my 4 year old who was seen at children’s hospital with a BG of 278 and 1 positive antibody. Upon recommendations I pushed for a CGM. She has been wearing the CGM since the end of April and it was quite telling. Many highs and some very symptomatic lows but nothing that’s read anywhere near as high as her 278 in March. With that being said, we repeated antibodies and she’s all the sudden negative..? Her ZNT8 result was nowhere near borderline in March. The normal value is less than 15 and hers was 100.1 at that time. In the last 2 weeks, she has only spiked into the 160s twice. Otherwise it seems as though I can’t hardly keep her out of the 60s and 70s. Regular complaints of headaches and just general malaise. She’s not sleeping. Something is just so off. We see Endo for a follow up on 7/3 and I’m certain they will advise to discontinue use of the CGM, which I am opposed to. I guess my question is, how is she antibody negative now? She is CLEARLY dysglycemic and I’m just at a total loss at this point.
Get a second opinion and have your daughter retested. It is obvious that something is wrong.
When I was first diagnosed at 21, I was in DKA and over 600 mg/dl. After 4 days in the hospital I was put on NPH and regular insulin.
My sugars were crazy for the first year. Some days I used no insulin and other days I needed 20-30 units.
Several times I thought I was misdiagnosed, but my high sugars always came back.
This is sometimes how it is with a dying pancreas. Sometimes it puts out enough and sometimes not enough.
I didn’t even out until my cpeptide was near zero.
After that it got easier to dose insulin.
With young kids the ups and downs can be more extreme.
The antibodies can also fluctuate depending on the state of her pancreas and the active immune response.
I have no antibodies now, but I figure I probably did back in 1987. They didn’t have the tests back then.
The reason I think that is, I also developed eczema and several new allergies. All of which resolved after the first year.
You are absolutely correct. But something IS wrong with the child. It is always good to get a second opinion and to do a retesting, several retestings over a period of time. The OP says nothing about the results of a c-peptide. That should be done as well. At the least the retesting will help confirm the variability of the present situation and prepare her for whatever is to come.
Why would you want to?
People taking insulin try to stay above 70 because injected insulin can be dangerous and you want a margin before you get dangerously low. That’s not an issue if she’s not taking insulin and you should check with a doctor but I don’t think there’s anything wrong with being in the 60s. Plus, the CGM can easily read a little low in different circumstances.
Abbott Labs has started selling an over the counter CGM. I’m not in love with the idea because FDA said it was not accurate enough for use w/ diabetics. You might consider a manual blood sugar machine, which can be used when the kid is symptomatic. You can buy one over the counter at Walmart. https://www.youtube.com/watch?v=98xYjXLr6mA
I think that kids might run a little lower blood glucose than adults. Ask the doctor about this. They SEEM to define low BG in kids as less than 70, but CGMs have an inherent error in the readings of 20%. So, you might not actually be seeing low BG. They are accurate to around 20 points. They are less accurate at lower blood glucose values. Consensus Clinical Practice Guidelines for Inpatient or Urgent Care Management of Acute New Onset Hypoglycemia in Children - UCSF Pediatrics
My niece had a BG of 40 the other week at the doctors office. No one really batted an eyelash. She was cranky. But she’s on chemo and isn’t always eating enough. They gave her a sugar snack and never mentioned it again. It happens. She’s not diabetic.
She’s very symptomatic when she goes low. Visibly shaky, and she complains about her “heart beeping fast”. And any lows on CGM have been double checked with finger poke. Regardless, of the lows, it still doesn’t explain the ridiculous spikes she’s had between March and now, including and not limited to post prandial spikes at night 4-6 hours after meals. With what I do understand of this, it’s clear her pancreas is working to some extent still. But by no means do I think her antibodies in March were incorrect, just wasn’t sure why they’re negative now.
@Hope_Novotny you are doing all the right things. Antibodies going away is rare but does happen. Diabetes Care | Autoantibody Reversion: Changing Risk Categories in Multiple-Autoantibody–Positive Individuals
In your previous topic there was some incorrect info about diabetes antibody testing so I want to make sure you know that a single antibody only indicates increased risk. Two or more antibodies require some additional tests to differentiate between Stage 1 and Stage 2 T1D. Source: Diabetes Care | Consensus Guidance for Monitoring Individuals With Islet Autoantibody–Positive Pre-Stage 3 Type 1 Diabetes Table 1
Ask the endo about the highs and lows. I’m not a doc so I’m making a wild guess that they won’t be concerned, instead it will drive them to keep looking. While docs have a lot more tools these days with over 30 causes of diabetes other than autoimmune diagnoses can be hard.
How’s your daughter handling having a CGM? Out of curiosity what is the CGM reporting for Time in Range?