We are extremely concerned about our eleven year old granddaughter who has had diabetes since she was seven, and who has been in and out of the hospital many times in the last several years. The doctors have not been able to stabilize her blood sugar, which ranges from the 20s-600s mg/dl [1.1-33.3 mmol/L]. Yesterday she was over 600 mg/dl [33.3mmol/L] then down in the 50s mg/dl [2.8 mmol/L] in less then three hours. She wakes up crying in the middle of the night in pain, and her parents set the alarm in the middle of the night to check her blood sugar. This is getting worse as time go by. There are no specialists in our area, and she is seeing two different doctors, but they are confused. They cannot understand what is going on, they say that she is a “hard case”, we are afraid that we are losing her, and we don’t know what to do.

I appreciate the anguish that you are conveying. Certainly this forum does not allow for a lot of specifics: you did not indicate her insulin dosages, meal planning, other medications, etc.

While there are indeed “hard cases” of diabetes sometimes, my approach is that most of the times, those cases and those with so-called “brittle diabetes” can be approached best when you go back to basics and assess the integrity of the meal plan. Does the patient/family follow one?). Also, the insulin regimen needs to be evaluated trying to match the insulin to the meal plan and to the child’s physical activities.

Since you indicate that there are no “specialists” in your area, then I think you may have a good case to appeal to your insurance carrier for an appropriate referral to a pediatric endocrinologist and diabetes team. Not only should the patient and her parents go, but it sounds like you should go too. Even if insurance does not pay (and they should — your local doctors could write a letter in support of that), the trip may well be worth the time and investment.

Newer modalities of insulin dosing are more physiologic (meaning better mimic what is supposed to happen in nature), and there is now an insulin pump (which is not an artificial pancreas). However, these treatments still depend on rigorous blood sugar checks and meal planning. You may wish to contact the closest academic medical center or medical school. If they have a pediatric endocrinologist, perhaps they have an out-reach clinic closer to your home. If they do not, then their department of pediatrics or even your local doctor should be able to give you the name and number of such a specialist for you to call.

DS