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May 30, 2006

Behavior, Daily Care

Question from Elwood, Indiana, USA:

My 14 year old daughter was diagnosed two years ago. She started out on a sliding scale, then she went to an endocrinologist and went on insulin/carbohydrate ratio, then the pump, and back again. My daughter was uncomfortable with the endocrinologist, so we went back to our family doctor. She is back on a sliding scale and is not required to correct for meals/carbohydrates, etc., just blood glucose numbers. It was January when we went back to the family doctor. In March, my daughter's A1c was 9.2 so, obviously, he's not on the right track. I'm getting worried because when she was on the pump, they told her she could eat ANYTHING she wanted as long as she corrected. Well, she's not on the pump anymore and still wants to eat whatever she feels like eating. Her numbers are out of control and she eats ALL the time. She will correct for meals (we'll count the carbohydrates and count one unit for every 15 grams, just from experience), but only because she is figuring out that the sliding scale isn't exactly working. What can I do to get her on the right track? She won't listen to me, because I'm just mom and our doctor hasn't been strict with her like I asked him to be. We're very busy and don't always get to eat a complete meal, but I buy her pre-made meals for times like this. But, she treats those like a snack and still could eat a whole meal. Also when she's "high," she gets very hateful, angry and obstinate, so, I must force her to check and correct (but not without a fight). What advice do you have?

Answer:

You will probably not like my answer. My qualifier and disclaimer is that your daughter needs to see an endocrinologist, preferably a pediatric endocrinologist.

Let’s start near the beginning: WHY didn’t your daughter like the pediatric endocrinologist? Was it a personality issue? Did she/he talk down to your daughter? Or, maybe the pediatric endocrinologist wasn’t cutting any slack and said, “Here are the things you have to do.” Your family doctor is not strict. Structure and “strictness” are what children with diabetes REQUIRE to be successful.

A sliding scale prescribed by your family doctor is not at all appropriate, in my view, unless your daughter has learning disabilities or similar. With the sliding scale, as you note, you are giving insulin based on the glucose reading; you are “chasing” the blood glucose. If she doesn’t check for 12 hours, you must chase down many hours worth of potentially stinky control.

The basal-bolus plan, whereby there is background insulin and then extra rapid-acting insulin based on carbohydrate intake (insulin-to- carbohydrate ratios), whether by multiple daily injections or by pump, is much more physiologic and mimics Mother Nature. But, it requires dedication and a willingness to count the carbohydrates/calories and dose insulin with most every meal plus give small corrections, as required.

If your daughter does not have the maturity or responsibility level to do this, and you cannot control a 14 year old (as if that is really possible), then perhaps your daughter needs to go on to the older, less physiologic, but certainly acceptable “split-fixed” dosing of insulin whereby she gets the same intermediate and short-acting insulin injections about the same time two to three times a day. The trade off is she must then eat about the same time and the same amount each day.

Diabetes is frustrating and requires work. Based on your brief description, perhaps your daughter is not willing to do what it takes to really be in control. Maybe YOU have to take over for her – injections, blood sugar tests, etc.

I’d start back with your pediatric endocrinologist. Be up front – you don’t need to be personal: “My daughter didn’t seem to click with you, and this is why: etc. etc. If you feel that we can overcome this, please help. But, if you feel she may click better on a different level with one of your colleagues, can you help guide us?”

Physicians, at least pediatricians, do not typically look at “second opinions” as threatening. Identify the problems; then, try to address them. In your state, the Children’s Hospital in the capital is wonderful and has many pediatric endocrinologists.

DS