My four year son was diagnosed with ketotic hypoglycemia almost a year ago. It is progressively worse. He is a monster, stubborn and inconsolable, almost every morning now even though we give him an Extend Bar every night before bed. His blood sugar is erratic. This morning we took his sugar 10 minutes after he had some orange juice, which helps him bounce from the low and makes him then cooperate enough to eat, and his blood sugar was 171 mg/dl [9.5 mmol/L]. I took it again 30 minutes later as he was eating, and it was down to 67 mg/dl [3.7 mmol/L]. The doctors told me not to worry unless it gets to 200 mg/dl [11.1 mmol/L] because his liver is compensating for the low, but he is miserable. He has complained of itching “all over” for about two weeks. He cannot control his bladder completely. He is constantly leaking into his underwear. Our doctors just tell us to control it with diet, but food has become a power issue with him. He is of normal weight and height and thriving otherwise, and he is delightful except when he is low. Is there any doctor who specializes in ketotic hypoglycemia anywhere in the United States? It is agony to watch my child suffer.

This is not the typical presentation of “ketotic hypoglycemia, ” especially if it is happening daily. Ketotic hypoglycemia typically occurs after more prolonged courses of fasting or during illnesses. How was the original diagnosis made? It is certainly fair to PRESUME ketotic hypoglycemia in a younger child, but was the diagnosis confirmed? Were other issues excluded?

You may wish to ask for a consultation with a pediatric endocrinologist if you have not already. There are other possible, albeit less common, issues on hand here.

DS
Additional comments from Dr. Stuart Brink:

You should take your child to a pediatric endocrinologist. There are excellent pediatric endocrinologists in all of the university/medical school towns of Tennessee and the neighboring states. They can give you specific advice. You may also want to try cornstarch mixed in a drink in the evening since this may work in a more predictable and “smoother” fashion than what you are currently not having success with overnight.

SB
Additional comments from Dr. Tessa Lebinger:

Sometimes other rare disorders of metabolism or even growth hormone deficiency or cortisol deficiency can first look like benign ketotic hypoglycemia. I think you need to document some of these sugars in the laboratory and, if they are truly low or high, you need to work with a pediatric endocrinologist or metabolic specialist to make sure there isn’t something else going on.

TGL
Additional comments from Dr. Larry Deeb:

I am unaware of a true researcher. The traditional approach has been food at night. Maybe you even need to give him an additional snack. It is something he will outgrow.

LD