My 5 year old son was just diagnosed with Ketotic Hypoglycemia. When tested by his doctor (while having symptoms) he had blood sugar levels between 39 and 47 at his lows, and levels between 80 and 90 when normal. He had high acid levels in his blood and ketones in his urine at the time of the 12 hour fasting hospital test (but blood sugar was normal) and ketones again in the urine at our last office visit. He has had no seizures and no vomiting, although he does have other signs of being hypoglycemic.

All of the information I have found suggests that children with Ketotic Hypoglycemia are not eating enough and that this is what makes their blood sugar drop. The tests done on my child however showed low blood sugar while he was eating “normally”. “Normal” for him I mean, which is as much as my husband (a 165 pound man) eats at meals and four to five “healthy” snacks or small meals throughout the day. The doctor has told us that there is nothing more we can do to take care of our son, that we have unknowingly been doing just what we needed to.

However, he has shown the symptoms while we were doing all of this and he starts Kindergarten in one week. I know he will get less food at school then he has been getting at home. Should I worry about this? And just how serious is this type of Hypoglycemia? Beyond telling them he needs the extra snacks should I be telling them anything else? Or should I know anything else for myself?

It would be very unusual for someone with ketotic hypoglycemia to not respond to a meal plan prescription including meals and snacks — all with protein and some fat — every 2-3 hours. Eating frequently is not always the key, in my experience, but rather adding and making sure that each meal and each snack has some protein and fat to prolong the availability of the food/energy. Also, staying away from simple sugars sometimes even fruits and juices is sometimes very important to prevent the hypoglycemia that can occur several hours later — presumably from an over-abundance of insulin production.

From your description, it would also be important to know if an insulin level was drawn at the same time that the hypoglycemia was documented. Also cortisol levels. You should go back to your endocrinologist and ask about these to be sure that there is not some other cause for the hypoglycemia. Staying in close contact with your endocrinologist will help solve this problem. He or she can also give you specific advice for the school staff since they will have to be strict about supervising timely snacks during the school hours. And they must do so under federal rules under the Americans for Disabilities Act — hypoglycemia would be automatically covered legally.

SB
Additional comments from Dr. Lebinger:

If your child is developing low blood sugars a few hours after eating, rather than after an overnight fast, he might need further evaluation for other rarer forms of metabolic disorders that might need some more specific treatment.

TGL