I am writing on behalf of my seven year old nephew in Nebraska, who was diagnosed with type 1 diabetes in August, 2005. The diagnosis was a horrible experience for his parents because the onset was so rapid and unexpected (overnight) that he came very close to death.

Since that time, his parents and he have been very closely monitoring his blood sugar level, taking insulin injections before every meal, and eventually adding Lantus at night, but his sugar level continues to fluctuate tremendously. In one day, it can range between 60 and 600 mg/dl [3.3 and 33.3 mmol/L]. On other days, it will be quite stable, so his insulin intake varies greatly day by day.

The following regimen was established after much confusion during the honeymooning period. He actually wore a devise under his skin for one week that took blood sugar measurements every few seconds in order to help devise a plan that could control the fluctuating sugar levels. To my knowledge, they have been using this regimen for about two months. They had great success in the beginning, but over the last few weeks, the blood sugar fluctuations have been quite drastic: one unit for every 100 mg/dl over 100 plus one unit for every carbohydrate in his meals. Then, Lantus before bedtime, and a 3 a.m. blood sugar test.

They have been recording his blood sugar readings on a document that they fax to the specialist every month.

We are all very concerned about his long term health because of these fluctuations and his parents are absolutely beside themselves. We have put our heads together to try and target the possible solution and here is what we came up with:

We all agree (my brothers, sisters, wives) that my nephew is not sneaking food, so this isn’t causing the blood sugar spikes. They use a fairly short needle, and since my nephew is a little chubby, maybe a longer needle would place the insulin in a more accessible area for more appropriate uptake by the blood stream. Should we talk to the doctor about measuring carbohydrates in condiments? We were originally told that measuring carbohydrates wasn’t an exact science, that things like ketchup and ranch dressing didn’t need to be measured. Maybe we should re-evaluate that and measure carbohydrates more exactly? Should we look into an exercise program, reducing carbohydrate intake and increasing protein and fats? We would, of course, work with the dietitian to do this, but right now he is eating around 12 carbohydrates a day.

What are we missing that could be causing these fluctuations and spikes? In your opinion, could any of our suggestions help regulate the fluctuations and spikes more appropriately? Can you make any suggestions that we can discuss with our health care providers?

First of all, let me say how wonderful it is that the family has taken this on as everyone’s project!

Your nephew has had his diabetes now for five months. It does seem a little (and I emphasize LITTLE) strange that he has such impressive glucose fluctuations despite his “honeymoon.” My experience is that commonly, while the glucose levels are not perfect, usually they fluctuate less during the initial weeks into the diabetes honeymoon.

Your nephew has been placed, it seems, on an intensive insulin regimen using a long-lasting (basal) insulin [Lantus] and then some type of short or rapid-acting insulin before meals. You did not indicate which insulin this “bolus” insulin was: it probably would not make a difference if it were Humalog or NovoLog, but it might make a difference if it were Regular insulin.

Rotating the injection sites using the appropriately sized needle is important and a good thought. Change the bottles of insulin after 30 days. Store UNOPENED insulin in the door of the refrigerator; you can store OPEN, USED vials of insulin at room temperature (not on the window sill, not in the draw next to the dishwasher, etc.)

Daily fluctuations, in the big picture, are not thought to generally be problematic in terms of short or long term outcomes. It is the “forest-from-the-trees” as assessed with the Hemoglobin A1c test that helps determine long term consequences. I must add that more research is being done on potential ill-consequences of the wide glucose fluctuations. But, the fluctuations may be doing nothing more than driving people crazy and having no real effect on the boy!

I typically do not ask my families for routine middle-of-the-night glucose checks, although sometimes some periodic checks are required. Unless someone is already awake (or the adults don’t mind), I find that the common thread of early morning checks is lack of sleep and grumpiness/resentment on everyone’s part at home.

While no carbohydrate is really created equal (the 15 grams [one carbohydrate unit] in some pizza crust is not digested exactly as the 15 grams in a small glass of juice), still “a carb-is-a-carb-is-a-carb.” So, I would emphasize that if one does not really count carbohydrates as accurately as possible (and I do NOT expect people to be perfect all the time), it is no stretch of the imagination to realize that it does not take too many extra strands of spaghetti or an extra portion of potato salad to add extra carbohydrates. Do you need to count the carbohydrates in ketchup? Probably not. It is more important to recognize accurately the carbohydrate portions in the handful of french fries or the size of the bagel. Some families do weigh foods in the beginning. I think that those families become pretty good “guesstimators” of carbohydrates down the line.

Finally, remember that glucose control hinges primarily on the interaction of three major factors: insulin, food, and exercise. Regular activity is so helpful! It may have a delayed effect upon glucose levels (dropping down some hours after the exercise).

I presume the care is directed by a pediatric endocrinologist. In Nebraska, there are pediatric endocrinologists in Omaha (at the University but also the Children’s Hospital); I personally know a couple of them! They likely have outreach clinics in the mid- and Western portion of the state. (There may be other pediatric endocrinologists that I am unaware of in Nebraska). If your relatives are out in the western regions, then your closest pediatric endocrinologist might be in Denver. You may choose one in Iowa or Kansas City, too.

Bottom line: I’d first find out about the A1c values before I am willing to ask the family to “micromanage” yet.

DS