From Lincoln, Nebraska, USA:
My 3 year old son has been off insulin for about 2 1/2 months, and while we work hard to avoid high blood sugars, we are also fighting lows. He needs to eat every 2-4 hours, and we have to test him throughout the night. We have to wake him at least once in the night to feed him. He has had blood sugars in the low 50's and high 40's, but we have not been willing to let him go longer to see if it will drop lower. He can drop from 174 to 59 in an hour so we find ourselves testing him 10-12 times every 24 hours. We don't feel that forcing his blood sugars higher (with refined junk foods) is productive because it is not healthy, and because even when his blood sugar is over 200 his body still corrects it back within about the same amount of time. Overall, we are maintaining excellent control, mostly staying between 70-120 (because we test so frequently). We eat a whole foods diet and exercise a lot.
Do you see hypo and hyperglycemia in children not on insulin? Any suggestions to avoid these lows? When not on insulin, how low is too low? (I can usually tell when he is going low, and my husband's monitor actually compares about 10 points lower than my son's monitor -- so it could be possible he is even lower?) Also, is there anybody who knows or who has seen a person as young as 3 with active MODY (see below)?
By way of background, my 3 year old son was diagnosed with diabetes two months ago (blood sugar was 459). As I stated above, he is not on any insulin or medication now (he was on insulin for about 2 weeks at first, but he could not handle even 1/2 unit of Ultralente 1 time per day). We have reason to believe he has MODY. His insulin-antibody, C-peptide, and GAD tests have all come back normal (did not point to either type 1 or type 2). My husband had onset of diabetes at age 30 almost 4 years ago. He manages with diet and exercise and 1.5 mg of Amaryl [a pill for Type 2 diabetes] in the morning. Both are very slender. My husband's mother has been on insulin for 10 years (she is in her late 50's), but suspects she has had diabetes since her late teens or early 20's.
Our hope is to continue excellent lifetime control with exercise and diet, but we are looking for others who have experienced or witnessed others with similar situations (we haven't found anyone yet).
I think that there may be several possible explanations for the unusual blood sugar story in your son. It is clear first of all that back a few months, he showed a degree of glucose intolerance that was sufficiently severe as to require some insulin albeit not very much. The most probable explanation at that point would have been that he had Type 1A (autoimmune) diabetes; but the fact that his antibody test was negative for GAD and anti-insulin antibodies is very much against this. It could of could of course have been a laboratory error; but I don't think that the test would be worth repeating unless your husband had had a positive test when he was diagnosed.
What I think is happening is that the insulin release mechanism has been damaged by whatever process is going on. What this impairment of first phase insulin release might lead to is an initial inadequate response to any sort of a carbohydrate load with consequent high blood sugars followed by a delayed insulin response after the blood sugar had subsided which would lead to a low blood sugar. This is a recognised but uncommon phase in any hypoinsulinemic state. Children with Type 1B diabetes also do this although the reversion to insulin independence is usually uncomplicated and the condition is in any case uncommon in Caucasian families and does not have a striking family history.
Your suggestion that this might be one of the forms of MODY, specifically MODY3, is certainly a possibility. These children are not usually insulin dependent initially; but may become so in later life. The defect is a hereditary mutation in the long arm of chromosome 12 of the gene for HNF-1a. Some of these children are obese which may require treatment; but for the most part they can be managed by diet and exercise and perhaps later oral hypoglycemics.
Getting a specific diagnosis is a complex affair and is generally not pushed, because it does not affect treatment. A delayed first phase insulin release can be identified by doing a glucose tolerance test followed by repeated insulin levels over four hours or so and of course chromosomal analyses can also be done.
As to treatment, you probably have a rather accurate profile of daily blood sugar levels so you have some idea as to when hypoglycemia is most likely. Even so I think you might be helped by talking to an experienced dietitian: the advice I got on this was to try uncooked cornstarch with meals to sustain blo0od sugars and as a night time snack e.g., NiteBite, Glucerna, etc. Finally I would expect this phase to wear off as insulin production gets gradually diminished; but in the meantime you should try to avoid blood sugars below 50 mg/dl.
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