My six-year-old daughter, who has Down syndrome, was diagnosed with type 1 diabetes when she was four-years-old and has been on Lantus and Apidra ever since. Her blood sugars are always in the 200 to 300 mg/dl [11.1 to 16.7 mmol/L] range, sometimes 300 to 400 mg/dl [16.7 mmol/L to 22.2 mmol/L]. You can count on your fingers the number of times that she has been below 200 mg/dl [11.1 mmol/L]. At present, she is on 10 units of Lantus every morning and 2 to 3 units of Apidra depending on the amount of food that she eats and which I give during breakfast, lunch and dinner. She is a picky eater and we always have a hard time getting her to eat breakfast. Her usual morning blood glucose reading is somewhere from 178 to 285 mg/dl [9.9 to 15.8 mmol/L] and sometimes goes up to 300 mg/dl [16.7 mmol/L]. If I give her 3 units of Apidra within 20 minutes of breakfast and she hasn’t eaten enough, she would go as low as 63 mg/dl [3.5 mmol/L], sometimes lower. There are times I would only give her 2 units Apidra because I’m so afraid she’ll have hypoglycemia, but, after getting a blood sugar over 200 mg/dl [11.1 mmol/L] two hours after eating, it seems her insulin shot of 2 units is not enough. On the other hand, if I increase it to 3 units, she’ll have a low blood sugar. I am deeply worried about the yo-yo blood sugar readings of my beloved daughter. What seems to be the problem? Are her insulin doses not commensurate to her needs/weight? She weighs 23 kilos (almost 51 pounds) at present. What do you suggest?

Given your uncertainty of how well your daughter is going to eat, then I think the insulin plan you are on with the long-acting Lantus and the rapid-acting Apidra are good insulin choices. However, you contradict yourself a bit stating that her glucoses are “always” in the 200 to 300 mg/dl [11.1 to 16.7 mmol/L] range but then you indicate that she can get to the 60s mg/dl [3.3 to 3.8 mmol/L]. REMEMBER, a NORMAL glucose for the person without diabetes, as well as the person with diabetes, is between about 60 and 100 mg/dl [3.3 and 5.6 mmol/L]. No doubt that your daughter’s doctor has given you a TARGET glucose to be happy for (e.g., a glucose between 80 and 180 mg/dl [4.5 and 10.0 mmol/L]) but don’t be too concerned with glucoses in the 60 and 70s [3.3 to 4.4 mmol/L], in my opinion. Might she feel “low” with such NORMAL glucoses? Maybe, especially if she is so used to having such abnormally higher glucoses in the 200 to 300 mg/dl [11.1 to 16.7 mmol/L] range.

Based on your letter, I think you may be your own obstacle by not “allowing” her to get in tighter glycemic control. Do you count carbohydrates for her? Do you dose the Apidra based on her carbohydrate intake? If you are not certain that at any particular meal she will eat all the food/carbohydrates you have counted, then it would be okay, on those specific occasions to dose the Apidra RIGHT AFTER she ate based on the insulin-to-carbohydrate ratio you hopefully have been given.

Have you been given a formula to calculate how much insulin to give extra to “correct” her for higher glucoses before and/or after meals? Talk to your pediatric diabetes consultant about how to do this with a specific target glucose value and a sensitivity factor. If you have such a calculation already, and it doesn’t get her to the target, then you must talk to your consultant about resetting some parameters for the target or the sensitivity factor.

If she gets 10 units of Lantus daily, I’d assume she weighs about 16 to 25 kilograms (35 to 55 pounds), which is what you said. But if her morning glucose is significantly above the target you have been given by her diabetes specialist, then that would also support that the dose of Lantus is inadequate, despite her weight.

Furthermore, your daughter has Down Syndrome. This condition can be associated with other autoimmune and organ disorders that could impact glucose control and regulation.

For example, children with Down Syndrome sometimes have poorer ability to “decongest” the lymphatic drainage of the body and therefore can be “puffy.” If the drainage from around the bloodstream of the intestines is impaired, nutrient absorption could be inconsistent thus impacting serum glucose levels.

While other autoimmune disorders that can affect the thyroid, adrenal, and impact the intestines in other ways (e.g. celiac disease) are more common in type 1 diabetes and impact glucose metabolism, there is a further increase incidence of such disorders in individuals with Down Syndrome. If these have not been screened for in your daughter within the year, her regular diabetes consultant may wish to consider these also.

I think you might benefit from some one-on-one sessions with a Certified Diabetes Educator, if available to you.

DS