Question from Upper Gagetown, New Brunswick, Canada:

My five year old daughter has had ketotic hypoglycemia for about two and a half years now. She first started showing symptoms by wetting the bed, not being able to get to the washroom fast enough and then started having shaky spells mostly in the morning when she was starting to eat. She was hospitalized and tests were done to confirm, but to their amazement she has low and high readings. After a low reading, they gave her an injection of glucagon, and her sugar reading went even lower; next time it did come up a little bit. She mostly has low readings, but they can come at any time of the day now. Sometimes it is hard to get it to stay up. I make sure she has carbs with protein to try to maintain it, but it doesn’t seem to make any difference. My concern now is that she is having these days more and more often. She has been very hungry for the last two weeks and wetting herself all over again. I thought she may have a bladder infection, but urine tests were clear.

I have taken her to her pediatrician every six months for follow-up who feels she should outgrow it soon, but we do not feel that way, we think she is getting worse. She saw a pediatric endocrinologist when she was first diagnosed, who confirmed that it was hypoglycemia, but said it was rare to have some high readings as well.

Lately, her urine is sweet smelling and her readings are in the normal range, but she is still shaky at times, and it is hard to get a good reading most of the time because all she wants to do is eat. She weighs 45 pounds, which isn’t bad, I don’t think.

What should we do next? I don’t want to put her through all those tests again, but I think we need to find a new pediatrician who understands we need more answers. She is to start school in September, and I would like to have this under control.