From Hatfield, Pennsylvania, USA:
Over the past months, my five-year-old daughter has continued two to three month follow-ups with her endocrinologist on the basis of being positive for type 1 related diabetic autoantibodies, having random hypoglycemic spells and also having random high blood sugars. She remains UNmedicated thus far. Between her September and December appointments, her A1c rose slightly from 5.1% to 5.3% (although still normal) and she lost 1.5 pounds. I cannot help but wonder if even such a small rise in her A1c over the past months might signify further beta cell damage if she is indeed developing type 1. On the positive side of this slight A1c rise, she has had notably less frequent hypoglycemic episodes over this same time frame. Coincidence? I don't know. I wish I did. Being her mom, I can only go by my observations and the sequence of events that have played out over this past year.
I have also noticed a pattern to her glucose levels during minor illnesses on two separate occasions these past three to four months. During this past week, my daughter has been developing a slight cough combined with slight congestion, again. As this "cold" has developed, we have noticed her postprandial levels rise. The same happened during a previous illness. Her fasting blood sugars are still normal, 70 mg/dl [3.9 mmol/L] to 99 mg/dl [5.5 mmol/L], but her postprandial readings seem to take much longer to return to normal and are more frequently above 200 mg/dl [11.1 mmol/L] after she eats. Although these postprandial readings take longer to come down, they do eventually go back to normal (so far).
Being that our daughter has not yet developed full blown type 1 and still qualifies as a "non-diabetic" clinically, is it normal for her (or non-diabetics in general) to have blood sugars in the 150 mg/dl [8.3 mmol/L] to 250 mg/dl [13.9 mmol/L] range during minor un-medicated illnesses? We see these higher readings on non-ill days as well, but they are random and much more unpredictable. During illness, these highs are more "pattern-ized," almost as though we expect them after her meals. Can you explain blood sugar differences, if any, in diabetic verses non-diabetic people during illness? When is a good time to alert her endocrinologist to changes and what qualifies as "change?" Are the things I've told you something of importance as far as my daughters personal situation goes? Can I wait to discuss these things at her next follow-up?
Also, do you know of a board or support group for parents with children who are either pre-type 1 or who are currently living with these autoantibodies and symptoms? I would guess my daughter is not alone, but how do I go about finding others with this risk?
Unfortunately, this sounds like the pancreas is slowly "dying" and, thus, with illness, stress, growth spurts, etc., you see the higher blood glucose levels. If the insulin production can "recover," then the blood sugar levels will come down to normal after the "stress" dissipates. I would stay in close contact with your diabetes team and specifically closely monitor during such "stress" periods so that if and when the high sugars stay high for too long you can avoid ketoacidosis (DKA) and start insulin rather than let her lose weight, get dehydrated, etc.
If you are working with a large pediatric diabetes clinic, they may know of other families in similar situation - especially if there is a research project ongoing - but the numbers are generally too small to allow such group support as you inquire about. You also may post such an inquiry on the chat rooms of Children with Diabetes, CWD and the JDRF online diabetes support team. The local ADA chapters and the local JDRF chapters may also be able to connect you to other families.
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