By Deborah Butler, MSW, LICSW | August 31, 2006 12:00 am
Your 10-year-old daughter just returned from diabetes camp. She said that everyone was using an insulin pump, and she wants one too. You are worried about having a tiny computer deliver insulin into her body. Should you ask your daughter’s health-care team about pumps?
Your three-year-old son is a very picky eater and you are having a very hard time controlling his blood glucose levels, even with multiple injections every day. You have heard about insulin pumps, but is he too young for one?
Your teenager has been using a pump for about three years. She is now on the cheerleading team and she does not like being connected to the pump because of how it looks on her clothes. Should she switch back to injections?
These are all common scenarios for parents of children or teens with diabetes. If you’re facing a decision about whether your child should use a pump, this article may help by explaining some of the advantages and challenges of insulin pump therapy for children and teens.
An insulin pump is a small, computerized device that is programmed to continuously deliver basal, or background, insulin and that also allows bolus doses of insulin to be delivered to cover meals and snacks. The pumps currently on the market are about the size of a cell phone.
An insulin pump is worn outside the body; no surgery is necessary for insulin pump therapy. Instead, an infusion set is used to connect the pump to the body. An infusion set consists of a small plastic cannula, or catheter, that is connected to a length of plastic tubing, which transports insulin from the pump reservoir to the body. The cannula is inserted into the fatty tissue just under the skin with a small needle, either manually or with an insertion device. The needle is removed after the cannula is inserted, and the cannula is held in place with tape.
Most children place their infusion sets on their abdomen or buttocks or occasionally their thighs. Infusion set site locations should be rotated just like injection site locations are rotated. It is advised that the cannula, tubing, and insulin in the pump reservoir be changed every two days in children and teens, both to prevent infection at the insertion site and because insulin tends to degrade when kept at warm temperatures, as it is in an insulin pump worn close to the body.
Only rapid-acting or short-acting insulin is used in an insulin pump. Because the pump is programmed to deliver a small amount of insulin continuously to keep blood glucose levels in target range between meals, there’s no need for injections of long-acting insulin. Pumps on the market today can be programmed to deliver different basal rates at different times of day or for the duration of particular activities.
Bolus doses are not preprogrammed the way basal rates are. Instead, a bolus dose must be programmed every time your child eats. Bolus doses are based primarily on the amount of carbohydrate the child is expected to eat. The bolus dose can also be fine-tuned based on the child’s blood glucose level before the meal or snack. If the blood glucose level is higher than desired before a meal, the mealtime dose might be increased. If it’s lower, the mealtime dose might be decreased.
Because bolus doses are tailored to the meal they precede, pump users (or their families or caregivers) must be willing to check their blood glucose level before each meal or snack (as well as at other times recommended by the health-care team) and must know how to count carbohydrates.
Bolus doses can also be used to bring down random high blood glucose levels between meals. However, the need to give frequent between-meal boluses suggests that something in the diabetes regimen needs to be changed to prevent high blood glucose levels.
One of the advantages of using an insulin pump is having flexibility with regard to mealtimes, sleeping, physical activity, and family schedules. People who inject longer-acting insulins often must eat at particular times because their insulin is “peaking,” or reaching maximal effectiveness, at that time. Were they to skip a meal or snack, they might develop hypoglycemia (low blood glucose). But the slow, steady, basal infusion of rapid-acting insulin supplied by a pump doesn’t have a peak, so it is not as important to maintain a rigid schedule for when your child eats, as long as any food is covered with a bolus dose of insulin when it is eaten.
Kids can also sleep late on the weekends if they wish, because they do not have to worry about taking a morning insulin shot or eating to avoid hypoglycemia. The pump is supplying a continuous dose of insulin at a preprogrammed rate that should keep blood glucose levels in target range.
Another advantage to using a pump is that dose sizes are extremely precise. Insulin doses can be fine-tuned to hundredths of a unit with a pump, something that would be impossible to do with a syringe. This precision can be particularly helpful in young children, who often need very small doses of insulin.
As mentioned earlier, pumps allow more than one basal rate to be programmed, so if your child’s blood glucose level tends to run high during a certain time of the day or night, the basal rate can be increased during that specific time period. Conversely, the basal rate can also be lowered temporarily to avoid low blood glucose at certain times (such as during or after physical activity).
For all of these reasons, some people experience better blood glucose control and fewer episodes of low blood glucose with an insulin pump. Some pump users also say that they feel more comfortable administering insulin in public with a pump, because they only need to press a button to receive insulin, rather than having to draw up and inject insulin with a syringe or use an insulin pen.
Insulin pump use also comes with some challenges. One of those challenges involves body image concerns. Some people do not like the idea of being tethered to the pump via tubing 24 hours a day, and they do not want to worry about where to wear the pump on their clothing. Some people who are more private about their diabetes do not like the visibility of a pump, and they do not like having to explain the pump to others.
Athletes who play contact sports generally disconnect the pump while playing, then reconnect afterward. Some find the disconnection and reconnection a bother or a worry. In addition, an insulin pump can only be disconnected for up to about 1 to 1 1/2 hours, so if a game or practice lasts longer than that, your child may need to reconnect to his pump in the middle of the activity to infuse some insulin.
Inserting an infusion set can cause discomfort and arouse anxiety in some children and teens. Another concern is the risk of skin infections that can occur at the infusion site.
If a pump malfunctions, there is a more immediate risk of diabetic ketoacidosis, a serious condition characterized by very high blood glucose levels, because there is not enough insulin in your child’s system. The pump should sound an alarm if the pump malfunctions or if there is a kink in the tubing, but it may not sound if the tubing is not completely blocked. Frequent blood glucose monitoring is necessary with pump use to identify such problems as soon as possible in the event that the pump alarm does not sound. The possibility of a pump malfunction, such as a kinked catheter, while a child is sleeping is particularly worrisome to some parents.
Some people also worry about the pump delivering too much insulin, but this is a highly unusual problem since the pump possesses multiple safety checks to ensure that this will not occur.
Setting up basal rates and bolus doses takes time, effort, and extra blood glucose monitoring. Some diabetes care providers ask pump users to fast for three to four hours at a time to help determine basal doses, and some recommend blood glucose monitoring before and after meals to check whether bolus doses are set correctly. It may take a few weeks to a few months to figure out the correct basal rates and bolus doses and feel more comfortable with the dosing. And because insulin requirements change for growing children, it may be necessary to repeat the whole process periodically.
Another challenge of pump use is the expense. An insulin pump and pump supplies can be more expensive than injections, so if you do not have adequate health insurance coverage, you may want to consider the additional costs associated with pump use before purchasing one. Health insurance generally reimburses 80% of the cost of a pump under durable medical benefits, but this varies, depending on the policy. If you are having trouble getting insurance coverage for a pump, a pump company representative may be willing to talk to your insurance company directly on your behalf.
Starting an insulin pump is a big project that requires time, commitment, and learning new skills. Here are some things to think about if you are wondering whether your child would be a good pump candidate and if now is a good time to start pump therapy. One thing you may not need to worry about is age: Researchers have found that children as young as toddlers can do well on the pump.
Talk to your child. First of all, make sure that your child is interested in using a pump. Your child is the person who will be wearing it all of the time, so make sure that your child is interested in pump therapy.
Assess your child’s current diabetes management. If you are having trouble with your child’s current diabetes treatment plan, you may want to hold off on starting a pump, because pump management can be more complex than injection therapy. For example, if you are not presently using carbohydrate counting, if you or your child forgets to check his blood glucose levels regularly, or if your child misses insulin injections on a regular basis, you and your child may not be ready for the pump.
Learn more about pumps. Both you and your child should talk to your child’s health-care team about the pump and, if possible, talk to other families who have a child using a pump. It is important to discuss the pros and the cons of pump therapy and become educated about how the pump works and what is involved in maintaining optimal pump therapy.
Examine your expectations. A lot of people think that using a pump will automatically bring about better blood glucose control, but this is not the case. Some people think that the pump is automatic and gives insulin according to the body’s needs, but it does not. So-called closed-loop systems, which both sense blood glucose level and deliver insulin, are not yet available. The current pumps only provide insulin as programmed by the user. Although some people eventually achieve better blood glucose control with a pump, there is usually an initial adjustment period after starting it, so you may not see the improved blood glucose results you are hoping for immediately. Even though the newer insulin pumps have software to help calculate bolus doses and keep track of how much insulin has been delivered over the course of the day, you still need to be the “brain” for the pump. The pump is not a cure for diabetes; it is just a different method of delivering insulin.
Think about timing. During the pump initiation phase, it is necessary to check blood glucose levels several times a day and also during the night. Given these requirements, you will want to give some careful thought to when to start the pump. Your child may not want to start the pump during final exams, before a major trip, right before he is leaving to go to sleep-away camp, or right before he leaves for college for the first time. Parents may want to avoid starting the pump during their busiest work time of the year or if they are expecting another child. Some families choose to start the pump in the summer or during a school vacation. Pump initiation may also depend on the availability of appointments with your child’s health-care team members.
Make sure there is parental support. When a child starts a pump, both parents should be interested in the pump, not just one parent or the child and one parent. In addition, all adult caregivers should be willing to learn to program the pump and to count carbohydrates, regardless of the child’s age.
Plan ahead for day care or school. Before ordering a pump, it is good to figure out who will be in charge of the pump at your child’s day care, school, or after-school program and whether this person (or persons) is willing to learn how to give a bolus dose and assist with carbohydrate counting.
Discuss body image concerns and privacy. Your child or teen should think about what it will be like being connected to the pump all of the time. Will it bother your child to be connected to the pump during the day and while he is sleeping? Where will he connect the infusion site? Where will he wear the pump? Will it bother your child to have to disconnect the pump for sports? Will it bother your child to answer his peers’ questions about the pump, if and when the pump is visible?
Have a professional evaluation. Your child’s health-care team may already have a pump evaluation protocol in place. At the pediatric center at the Joslin Diabetes Center, for example, a pediatric endocrinologist, nurse educator, registered dietitian, and mental health clinician (social worker or psychologist) complete a multidisciplinary pump evaluation. If your child‘s health-care team does not have a formal pump evaluation protocol in place, discuss the issues raised in this article with your child’s health-care team.
In some cases, a health-care team might suggest postponing pump initiation if a family is struggling with the current diabetes treatment plan, if either the child or the parent is not interested in the pump, or if there are other stressors occurring in the family’s life that would interfere with learning the skills necessary for pump therapy.
Once a child has gotten the go-ahead for a pump, many pediatric pump programs start with a saline infusion so that the child and family can practice the pump features while still receiving injected insulin for a brief period of time (a few days to a week). This practice usually follows the decision to purchase the pump, so it is important to review any major concerns beforehand.
Once you and your child have decided to go forward with insulin pump therapy, it is important to think about how to maintain optimal pump therapy over time.
Maintain parental involvement. Parental involvement is very important for all children and teens with diabetes, including those who use an insulin pump. Sometimes parents become less involved with diabetes management when their child starts the pump for several reasons: The child may be looking for more independence, the parents may be “burned out” on diabetes management and need a break, the child may learn the computer programming faster than his parents, or it may feel more invasive for parents to help with pump programming because the pump essentially becomes part of the child’s body. However, we know that children and teens benefit enormously from positive family involvement with diabetes pump-related tasks.
Plan ahead. Discuss with your health-care team what you or your child will need to carry around in case a pump-related problem develops, in addition to what you or your child normally needs to carry around (such as a blood glucose meter and sources of carbohydrate to treat low blood glucose). For example, it is a good idea to carry around pump batteries, an infusion set, and a vial of insulin and a syringe or insulin pen. If the pump malfunctions or breaks, your child will need to take insulin by a syringe or insulin pen temporarily until his pump is fixed or replaced.
Maintain realistic expectations. Even after starting pump therapy, it is important to maintain realistic expectations about what the pump can and cannot do for your child. Some people see better blood glucose control in the first three to six months after starting a pump, but over time, blood glucose levels may return to pre-pump levels, or diabetes control may even worsen over time. This deterioration might happen if you and your child are checking his blood glucose levels less often, becoming lax with carbohydrate counting, forgetting to bolus, or disconnecting the pump for extended periods of time without any backup insulin or if overall family involvement has decreased.
Stay consistent. Consistency is very important for optimal pump therapy. It is essential to count carbohydrates and check your child’s blood glucose level every time he eats. The bolus of insulin should be delivered before eating (although toddlers frequently receive bolus doses after eating because of their often erratic eating habits). Some pump users become frustrated managing all of the data and do not always pay attention to the details that are necessary for optimal diabetes control. However, if you or your child is not checking his blood glucose and counting carbohydrates every time he eats, you will not be able to choose the proper bolus dose. Some people have reported that they forget insulin more often on the pump than when they were on injections, so it is easy to get off track. Frequent blood glucose monitoring is also vital on the pump because of the risk of diabetic ketoacidosis if the pump breaks or fails.
Prevent weight gain. Some people who start using an insulin pump report weight gain. The main reason for this seems to be the flexibility the pump allows in terms of eating. Some people starting the pump think that they can eat whenever they want and whatever they want, because they just need to “push a button” every time they eat. However, regardless of whether a person uses an insulin pump, eating more calories than are burned will cause weight gain.
Update your settings. Often, pump users neglect to make necessary insulin adjustments with growth, activity changes, etc., because the pump has become so automatic and appears to “self-correct.” Remember that a pump is not smart, so the person (and family) using the pump needs to be. The basal doses and the calculations needed for carbohydrate intake and blood glucose correction doses need to be changed according to the child’s growth, phase of pubertal development, sports schedule, etc. It is important to continue frequent follow-up with your child’s health-care team to make these changes in a timely manner.
If your child’s blood glucose control seems to be deteriorating with pump use, there are additional strategies that you can try to help improve the situation.
Increase parental involvement. Some preteens and teenagers take over a lot of their diabetes management tasks when they go on the pump, and they can get burned out or overwhelmed with this responsibility. With increased family involvement, however, blood glucose control may improve.
Talk to your health-care team. Tell your health-care team what you and your child are struggling with in terms of the pump and overall diabetes management. For example, if your child has gained weight, is having trouble with site infections, or forgets to take bolus doses, talk about these issues. Your child’s health-care team can only help find solutions to these problems if they know about them.
Consider taking a pump “vacation.” Some people who normally use an insulin pump stop using it and return to injections for a while when they feel burned out from wearing or using the pump. A pump vacation can vary in time. For example, your child may just need a few days, because he is going on a beach vacation and does not want to wear his pump at the beach while wearing a bathing suit. Or your child’s pump vacation could be for a few months, during the summer or during an intensive sports season.
Before your child takes a pump vacation, discuss these plans with your child’s health-care team and review other insulin therapy options. Remember that a longer-acting insulin has to be added to your child’s insulin plan if he stops using his pump.
Consider switching back to injections permanently. Some people who are struggling on pump therapy decide to make a permanent transition back to injections. The main reasons for terminating pump therapy include burnout, worsening blood glucose control (because of forgetting to bolus, for example), infusion site problems, weight gain, or body image concerns.
The insulin pump is an exciting piece of technology, but it’s not for everyone. If you are wondering whether a pump would be a good idea for your child, discuss this with both your child and your child’s health-care team. If your child is currently using a pump and is having difficulty with it, you and your child should discuss this, too, with your child’s health-care team. What’s important is that you find a method that works for you.
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