Continuous subcutaneous insulin infusion therapy can provide improved diabetes care and improve quality of life for some children with diabetes. However, insulin pump therapy in children poses unique problems not faced in adult diabetes management. Appropriate supervision of pump therapy in a young child requires an adult who is motivated, educated, and available at all times to manage the insulin pump.
Over the past 10 years, endocrinologists and individuals with diabetes have increasingly attempted to reach near-normal blood glucose values in diabetes management. The use of the insulin pump to achieve these goals has become increasingly popular over the past 5 years.
As physicians gained experience using insulin pumps in adults and older adolescents, we began to question its usefulness in younger children. Parents, also, are increasingly asking about continuous subcutaneous insulin infusion (CSII) therapy in young children.
Parental interest is often driven by information obtained from Websites and chat rooms on the Internet. Insulin pump use as an alternative to injection therapy is often described in these forums as a promising alternative to achieve better metabolic control and a more flexible lifestyle for young children. These Websites are not always objective, however, and information obtained from chat rooms is often biased toward the individual needs of a single patient.
Nevertheless, the Internet is a powerful force influencing family and physician decision making. With increasing interest from families for insulin pump therapy, physicians need to be prepared to discuss the pros and cons of CSII therapy in children of all ages.
CSII therapy has proven to be an effective tool in diabetes management in adult patients,1 but the use of insulin pumps in younger children presents unique issues and poses problems not found in pump use in older individuals.
One of the cardinal rules for successful pump use is that individuals using the pump need to be committed to insulin pump therapy and are active participants in their diabetes management.2 Clearly, preschool children cannot be active participants in their pump therapy and generally will have very little say in whether their diabetes is managed with an insulin pump. School-aged children are usually participants in the decision to use or to not use insulin pump therapy, and the older elementary-school children may be able to learn to manipulate the pump functions. However, these children are cognitively unable to troubleshoot the pump functions when diabetes control is poor and cognitively cannot be relied on to appropriately calculate and administer bolus doses independently.3
This means that the parents or caregivers are actually the insulin pump “user” in cases involving preschool and even elementary-school–aged children. Thus, pump initiation in young children involves several additional steps not required for adult pump users. Even after training in pump use and pump initiation, the pump wearer is not the independent pump user, as is the case with adult patients.
In order for insulin pump therapy to be successful in young children, the patients’ caregivers must be available to adjust pump dosages, to program in temporary basal rates, and to increase or decrease bolus doses for food consumed. The children’s primary caregivers need to be readily available to the children, which makes all-day day care problematic for these families.
Pump management in more independent, older-elementary–school, middle-school, and high-school children may still be problematic. While 12- to 14-year-old children may be capable of learning carbohydrate counting and independently administering insulin doses for meals and snacks, we have found that many children this age frequently forget to administer their bolus doses when they are away from home.3 Parents must remain involved in their child’s diabetes management, reviewing blood glucose values and insulin doses that have been administered throughout the day. In the absence of an ongoing partnership between the child and the parent, no diabetes management strategy will be successful, including insulin pump therapy.
A major factor driving parent and physician desire for insulin pump therapy in children is the extreme variability in blood glucose levels found in very young children.4–6 These fluctuations are generally caused by inconsistent food intake of toddlers and preschoolers, as well as extreme fluctuations in physical activity levels. If a knowledgeable caregiver is consistently available to the child, adjustments of insulin for variable food intake may, in fact, be helped through the use of CSII therapy.4–6 Once again, this does mean that a knowledgeable caregiver must be with the child so that the required adjustments in bolus doses can be made. If a parent is not able to be with the child throughout most of the day, it is more difficult to be certain that pump therapy will decrease the wide glucose excursions seen in young children.
Unlike adjustments for food intake, adjustments for variability in activity may or may not be improved by CSII therapy. Unless a knowledgeable parent is available to the child to perform frequent blood glucose monitoring and to adjust basal rates throughout the day, using temporary basal rate settings depending on the child’s activity level, the pump will not greatly affect blood glucose fluctuations related to activity.6 At best, an insulin pump may be able to avoid some of the extreme high and low blood glucose values found in active preschoolers using a fixed dose of intermediate insulin, but it will certainly not provide the smooth blood glucose values found in adults with much more stable eating and behavior patterns. Parents and medical providers expecting consistent blood glucose results will be disappointed and frustrated with CSII therapy.6,7
Of concern to many parents and physicians is the long-term psychosocial outcome of pump therapy in very young children. Will the ultimate outcome be improved or diminished by the use of an insulin pump? This may depend on parental anxiety over the child’s diabetes and whether the anxiety and focus on diabetes is increased or decreased by CSII. Since CSII requires multiple bolus doses through the day and may require temporary basal rate adjustment, many physicians are concerned that pump use will increase parents’ focus on diabetes and on blood glucose values.
However, anecdotally, many parents of young pump wearers report the opposite.6 These parents suggest that knowing they can correct high glucose levels quickly, allow unplanned food without an additional injection, or not be concerned about hypoglycemia if lunch is not eaten promptly lowers their anxiety over their child’s diabetes. This results in a perceived improvement in quality of life.
More critical evaluation of the psychosocial results of insulin pump therapy is needed to determine which point of view is more valid. Long-term evaluation of psychosocial adjustment in children diagnosed with diabetes before the age of 5 will help to clarify what therapeutic approaches are most helpful in young children. Until these studies are available, physicians and diabetes care team members need to be alert to parents’ anxieties and help each family identify the care solution that is most useful to them.
In addition to the medical management issues, there are a number of practical considerations in CSII therapy in very young children. Their small body size provides relatively few areas for infusion sites, frequently leading to lipohypertrophy and occasionally severe lipoatrophy. It is currently unknown if there are any adverse long-term effects of CSII on adipocytes when continuous insulin exposure is initiated in early childhood. In addition, as preschoolers lose their “baby fat,” the decrease in subcutaneous adipose tissue requires more frequent set changes, so that preschoolers and elementary-school children often need to anticipate set changes every 48 h. This is especially true for active children.
Despite the difficulties of CSII therapy in very young children, some parents may find this approach to diabetes management more compatible with their temperament and lifestyle and may have the ability to devote the time and attention to this mode of diabetes management. Because the parents are going to be the pump users, it is helpful to have parents wear an insulin pump for several days to practice using the pump functions and to get a better understanding of the practical aspects of wearing an insulin pump.
Parents of children with diabetes are always searching for diabetes management strategies that will improve blood glucose regulation. A major motivating factor for better glucose control is the fear of long-term microvascular complications of diabetes. Intensified therapy has been documented to decrease these risks in adolescents and adults,1,8 making CSII an attractive choice for some patients undertaking intensified management. In addition, data suggest that intensified management may preserve residual β-cell function in adults.8
Parents of young children, and some physicians, may extrapolate these results to even younger preschool children. There are few data to support concerns that less intensive management of preschool children predicts an increased risk for microvascular disease in the future or exhausts β-cell function.9 However, there are data suggesting that the youngest children are at the greatest risk for episodes of hypoglycemia and at a higher risk for neurologic sequelae from this hypoglycemia.10–12 As in adults, the risk for hypoglycemia seems to be decreased on CSII, compared with injection therapy.10,13 Young children with frequent or recurrent episodes of hypoglycemia may, therefore, be candidates for CSII therapy. As with adults patients, CSII may increase the risk for ketosis.14
As more children enter preschool and elementary school wearing insulin pumps, we will need to determine whether the school setting is adequate to care for diabetes managed in this way.2 The age at which a child will be able to independently manage insulin pump functions is also unclear. One would assume, as in many other childhood developmental tasks, that children will be able to manage pump therapy at different ages, depending on the maturity and mechanical skills of the child.
For very young children with single parents, or for children with two parents working outside the home, insulin pump therapy may be a challenge. Whether nonrelated caretakers can be found for very young children who will be able to devote the care and attention required for appropriate insulin pump therapy will need to be determined on a case-by-case basis. How well the pump will work for these children and what percentage of children will be able to manage their diabetes with insulin pump therapy is yet unexplored.
In conclusion, there are few data to guide physicians in the choice of pump therapy for young children. Bougneres et al.’s experience from the early 1980s4 does indicate that parents can learn to manage diabetes using an insulin pump, even in preschool children. However, there are no data available to determine whether CSII therapy offers an improved mode of treatment in the long term. Follow-up reports on the successes and shortcomings over a 5- to 10-year period would be very helpful to physicians and families in determining the best choice of therapy for each child. Long-term psychosocial follow-up of children diagnosed at very young ages would be especially helpful, regardless of the mode of diabetes management.
Georgeanna J. Klingensmith, MD, is a professor of pediatrics at the University of Colorado School of Medicine in Denver. She is also Director of Pediatric Services at the Barbara Davis Center for Childhood Diabetes in Denver, where Rita Temple-Trujillo, LCSW, CDE, is a licensed clinical social worker and certified diabetes educator, and DeAnn Johnson, RN, BSN, CDE, is a diabetes educator.