Question from Hartselle, Alabama, USA:

After about two months following our initial concerns with her blood sugar in October 2005, our six year old finally began to normalize in terms of behavior with a strict diet of complex carbohydrates, protein, and regular snacks. We did see an endocrinologist who treats children, but is not a pediatric endocrinologist, and he simply dismissed all of my concerns based on in-office blood work, pretty much discounting the history and documentation I provided. We also saw a pediatric neurologist, who recommended a sleep study following actigraphy which indicated an eight minute periods of complete stillness on and off all day throughout the week. He thought narcolepsy, but I’ve never seen any indication of that nor has her kindergarten teacher. I wondered if it might be a blood sugar fluctuation. At any rate, she had begun to feel much better, so we went on with life based on the endocrinologist’s lack of concern and decided to forgo a sleep study for the time being.

When she recently experienced another migraine, as she has approximately every two months since the age of two, our daughter vomited for about 10 hours, as usual. When she finally was able to hold down some food, the cycle from October began again. She has been predominantly at 80 mg/dl [4.4 mmol/L] when I have checked her levels, once in the 70s mg/dl [3.9 to 4.3 mmol/L] (a new low), and a few times above 140 mg/dl [7.8 mmol/L] but below 200 mg/dl [11.1 mmol/L]. None of those numbers are alarming, however, her behavior has been off the chart for screaming and crying, aggression, and the usual “starving to death” scenario. She has wet the bed twice, which is completely abnormal for her. When she does have a higher carbohydrate meal, we get the behavior and the hunger. When she eats during the very hungry times, her blood sugar sometimes does not rise more than a few points in a 15 to 20 minute period and she is still hungry. This is the same pattern that followed her last migraine which prompted all the initial testing for diabetes. Our family doctor told me that given the fluctuation in cortisol levels due to pain with migraine, we could expect fluctuation in her blood sugar. We are a month out from the last migraine and have not regained normalcy yet. Your team concluded in November that my descriptions regarding her were not normal, but honestly, no other professional people seem concerned. Our family is concerned. I had mentioned the possibility of endocrine problems to the neurologist and mentioned neurological problems to the endocrinologist, but neither was willing to discuss any inter-relatedness, although there seems to be a chicken-egg kind of situation with blood sugar, migraines, and pain. What would you suggest in terms of next steps?