My daughter is nine years old and was diagnosed with type 1 diabetes at age six. She also has Down Syndrome. She initially was put on two injections per day, but has recently been changed to four injections. She gets Humalog, on a sliding scale, before each meal and Lantus before bed. I would like some information regarding the use of an insulin pump for her. Would this be a practical move to make? She is fairly high functioning, but she would not be able to operate the pump by herself. She is, however, able to check her blood sugar without assistance. But I don’t think she would be able to count her carbs and determine the corrected number of units to administer. Any information on this would be appreciated. I have read articles from parents that claim their 16-24 month old child was placed on a pump and this is very interesting to me.

From what you write it would seem that your daughter is unlikely ever to be able to live independently and is always going to need close supervision of her insulin program. With this in mind I do not believe hat there is a great difference in the quality of blood glucose control that can be achieved between a Humalog/Lantus regimen where the short acting insulin is given immediately after the meal so that the dose can be adjusted for pre-meal blood sugar and actual carbs consumed and a pump which can now offer multiple basal settings as well as a variety of ways of delivering bolus doses with meals. Injections are less expensive and perhaps easier for a substitute caregiver to manage; but they are also more burdensome in other ways such as the number of injections required. In the long run I believe that these differences will be immaterial because some of the intriguing new developments in transplant technology will have borne fruit such as the use of genetic engineering to introduce islet cell transcription factors into liver cells or the use of non-embryonic stem cells to recreate islets with at the same time circumventing the threat of autoimmunity. Before this happens though I think that infrared glucose sensors will be linked by radio to pumps. At first they will just suggest a bolus which will not be a big advantage to her; but a good many years before ‘cures’ are available the sensors will be reliably and safely linked to the pump to essentially provide an external pancreas. The devices that achieve this will be successors to the present ones; but because of these hopes I think that I would favour an unhurried move from injections to a pump.

DOB
Additional comments from Dr. David Schwartz:

Basal-bolus therapy, whether it be through multiple daily injections or with an insulin pump, can be intensive but should be able to lead to “tighter” glycemic control. As you recognize, there is no “one size fits all” plan for individuals with diabetes. But basal-bolus therapy can offer much individual flexibility in terms of activities and meal plans.

So to me, the crux of your question really will stem from just how high-functioning and reliable is your daughter with Down Syndrome. If you feel that she cannot be trusted to give herself insulin boluses with the pump, or might disrupt the controls that may intentionally or accidentally change the settings, or if she would not tolerate having a device attached or pump catheter inserted all the time, then I think a pump may not be ideal. Most pumps will have a “lock-out” feature that inhibits accidental (or not) adjustments, and the pumps can implement a feature that maximizes or caps the amount of insulin given as a bolus in a given session. These are rather standard safety features that could perhaps be used for your daughter if you proceed to pump therapy. But maybe she is high-functioning just enough to “unlock” those features?

In terms of overall glycemic control, pump therapy and multiple daily injection therapy (MDI) — all as basal-bolus plans — are fairly equivalent. Clearly pump therapy is more expensive and more invasive. If control is deemed adequate on MDI, then there may be no medical reason to switch.

Finally, I have used “modified” basal-bolus plans in some children and families with limited skills. A long-lasting basal insulin (e.g., Lantus) is given, but the meal bolus doses are rather fixed, and the patient tends to eat the same amount of carbs at given meals, thus allowing to dose those meals individually. For instance, if breakfast is the best meal of the day for the patient, and perhaps loaded with carbs, more insulin is given then relative to, say, lunch, if that meal is typically less.

These are all issues that you need to discuss with your diabetes team. If you do decide that pump therapy is right, yet it does not really meet your goal, you can always go back to MDI. A waste of resources, though.

Finally, I too have seen toddlers placed on pumps. I think that sometimes the health care team is “treating” or placating the the family rather than really being firm as to what might be best for that infant at that point in time.

DS
Additional comments from Dr. Larry Deeb:

This pumper would be no different from what you are doing now. I presume you count carbs and give insulin based on glucose and carbs; that wouldn’t change. If she could leave the insertion site alone and not break the pump, then you could manage it.

LD
Additional comments from Lois Schmidt Finney, diabetes dietitian:

As long as the child block is used and someone helps here with counting the carbohydrates in a meal, I think she would do fine, especially since she can test her own blood. We have had other kids and adults with Down Syndrome who use insulin pumps in that way and they do fine.

LSF
Additional comments from Barb Schreiner, diabetes nurse specialist:

A pump may be a fine option for your daughter. The biggest concern would be whether she would “play with ” the buttons and thus accidentally deliver an insulin dose. Parents of very young children have overcome this in several ways. Some toddlers wear their pumps in a pocket on the back of their shirts. Others have pumps with locked keypads (this prevents accidental button pushes).

BS