Our daughter has had Type 1 diabetes since the age of 6. She is 19 years old now. Around 13 years of age she was also diagnosed with myoclonic epilepsy. We are having a very hard time stabilizing her blood sugars. We have taken her to doctors from all over. She has had the insulin pump. She was involved with the study for the DCCT test. We’ve put her in the hospital and asked the doctor to stabilize her. We cannot do it. Please, I beg you to let me know if there are any other diabetic/epileptics out there. Where can we go for help?

My husband is a dentist. He spends a lot of time talking with endocrinologists from all over and yet we have no answers. The neurologist always refers to the endocrinologist. The endo refers us to the neuro.

Please help. Her readings can go from 120 to 480 in 3 hours day after day. She takes her blood 4-5 times a day.

It sounds like you are having a very hard time, but unfortunately I don’t think anyone can help you by E-mail. I assume your daughter’s seizures aren’t related to low blood sugars and she is not on any medications that affects blood sugars. I also assume that you’ve ruled out the possibilities that she is having low blood sugars (which she may not be aware of) then having rebound hyperglycemia (Somogyi effect). I assume you’ve ruled out the possibility that she is not giving her insulin. I also assume she’s tried to follow a stable meal plan eating approximately the same number of carbohydrates at the same time each day so she can try to match the insulin to her food (If her blood sugars are going up and down, I would not try to use a formula to change the food and insulin dose, but try to keep the food constant and find the best dose to match it).

Assuming all the above are true, you need to find a doctor, nurse educator, nutritionist, and social worker or psychologist to work with your daughter once or twice a week for several weeks to try and sort this out. It is very difficult to try and control someone in the hospital as the food, exercise, and schedule is rarely the same as at home, so once you get home, you have to sometimes start again.

TGL