Insulin pumps can be great tools for managing diabetes in people of all ages, including children, teens, and even infants. Because pumps constantly deliver a low level of “background” insulin, and larger doses need only be taken before meals (or to “correct” unexpected high blood glucose), they can allow a user greater flexibility with respect to meal schedules and food choices than conventional insulin injections. Pumps also deliver more precise amounts of insulin than can be measured with a syringe. And modern pump technology tracks how much insulin has been delivered, when it was delivered, and how much of it is still active in the body, so there’s less of a chance of taking too much and ending up with low blood glucose (hypoglycemia). (Click here for a list of insulin pumps that are currently on the market.)
Clearly, all of these characteristics can help a person achieve optimal blood glucose control. However, an insulin pump is only a tool: It can’t think for itself, and it is therefore only as “smart” as the person who is using it. In the hands of a motivated, diligent user, a pump can be a very helpful and precise tool. In the hands of a user who expects the pump to do the work for him, however, it may help to control blood glucose levels no better than any other method of insulin delivery. Even with a pump, it’s still necessary to count the carbohydrates in meals and snacks, match insulin doses to the foods being eaten, monitor blood glucose levels frequently, and make adjustments to meals, exercise, or insulin doses based on monitoring results.
Everyone who uses a pump should receive comprehensive training on how to use it. But no matter how much training you receive or how many instruction manuals you read, some issues don’t become apparent until a person is actually using a pump. Some pump-related issues seem to be more common among children and teens, possibly because of their active lifestyles or their developmental stages.
In this article, parents whose kids use pumps, kids who use pumps, and health-care professionals who work with kids who use pumps offer ideas, tips, hints, and advice on common problems and how to avoid them. Your pump trainer and diabetes educator are also great resources to call on when problems arise with pump therapy.
The most common mechanical problem that occurs with pump use is a bad infusion site. The infusion site is where the very thin Teflon or stainless steel cannula that delivers the insulin to the tissue just under the skin is inserted. Some cannulas are inserted manually, while others are inserted with a spring-loaded insertion device.
In most cases, a plastic connector joins the cannula to a length of thin plastic tubing, which carries insulin from the pump to the cannula. The connector is generally mounted on an adhesive patch that is stuck to the skin at the insertion site to help keep the cannula in place.
When a site goes “bad,” insulin is not being delivered properly at the infusion site. This can happen if the cannula becomes kinked or crumpled upon insertion or if the tip of the cannula is pressed against muscle or other tissue that does not absorb insulin well. Sometimes it’s not clear what the cause of the problem is, but signs that there is a problem include suddenly higher blood glucose or a gradual but steady rise in blood glucose.
If you see this happening, take (or give your child) a correction dose of insulin, then monitor to see what is happening. If blood glucose numbers do not begin to drop within an hour of taking the correction dose, change the site. Although some pump users just change the cannula and insertion site when they have apparent site problems, most diabetes educators recommend changing the tubing and reservoir (or pod) as well, just in case the insulin delivery problem involved the tubing, reservoir, or connections between the various parts.
Hints from Parents:
“Bad sites have been a problem for our nine-year-old. Move to the other side of the body, find some fat, and change often. We had to try a bunch of different cannula products from different companies until we found one that worked well for us.”
“Test often after a change of site. If you have a very high number twice in a row, change the site again.”
“We were told not to change the pump site right before bed. We ignored that once or twice, and wouldn’t you know that that was when we got a bad site and she was high all night and sick in the morning. We quickly learned to change the site right after dinner so we could see what was going on before bedtime and change the site if we needed to rather than go all night with a bad site.”
“We thought our son was having a series of bad sites, but when we went back and checked the procedures, as it turns out, he was forgetting to prime (fill) the cannula with insulin after the steel introducer needle was pulled out. He was requiring such a small amount of insulin at the time that it took 2 or 3 hours for insulin from the pump to fill the cannula, then he was high after every site change. After we got into the habit of priming, the problem went away.”
Note: Your pump manufacturer and trainer will provide instructions for priming the cannula as well as the tubing if your pump uses tubing (all but one currently do).
Site falls out
Probably every child (and adult) who has used a pump has had a site pull out at some time. In kids, this happens most commonly when kids are very active and sweaty, playing contact sports, or pulling on or taking off tight clothing such as jeans or items made of spandex. It can also happen at night in restless sleepers. The most dangerous of these is at night, because a child could go for hours without insulin if it goes unrecognized.
Although all pumps have built-in alarms for “no delivery,” the alarm sounds only if there is a blockage in the cannula or tubing. As long as insulin is flowing freely, the pump does not know whether it is being delivered under the skin, as desired, or into the air.
Sometimes a pump user will see that a cannula has pulled out, feel it, or notice that clothes or skin are wet from insulin. Sometimes, however, a cannula will pull out under a layer of tape and not be visible. There are times when the only way a dislodged cannula gets noticed is because of high blood glucose or symptoms of high blood glucose.
If you’re having trouble getting your child’s sites to stay in, ask your health-care provider or your pump’s customer support line for tips on tapes, adhesives, and other solutions to sites pulling out.
Hints from Parents:
“Try to secure the pump in a pocket or waistband at night, and keep the tubing rolled up and out of the way so that it cannot pull out. When our son had it loose in the bed, he’d get all wrapped up in the tubing, and the cannula pulled out.”
“We recently went to the tubeless pump, and that has solved the tubing problem at night. You have to make sure that the insulin pod is in a comfortable spot, although it seems to stick pretty good.”
“In the summer, we put IV prep [an antiseptic product that cleans the skin and leaves a tacky surface when dry] on, let it dry, put it on again, let it dry, etc., so that the adhesive really sticks well. Sometimes it is hard to get off, but we’ve learned that there are products to take off the adhesive, or even Avon Skin So Soft does the trick.”
“Grandma, bless her heart, sewed little pockets into all her undershirts for the pump.”
“I sewed a waist pouch of rather stiff fabric and put fleece on the inside so that it is soft. It has a wide band fastened with Velcro, and it holds the pump around the waist at night.” (Similar products are sold commercially.)
“If you think that the adhesive is lifting a little, don’t ignore it, because it will probably fall out.”
“Always, always be prepared with supplies to change the site, wherever you go. It is really stressful to get caught somewhere without supplies available.”
“In the summer months, with sweating and swimming, we have trouble with the adhesive not sticking. Ask for Skin Tac [a liquid adhesive] for the summer months. It seems to work great to keep it on during swimming.” (Skin Tac and similar products are available over the counter but may be reimbursed by insurance if you get a prescription for them.)
“We found that the cannulas that go in at a 45-degree angle stay in better than the ones that go straight in. They look a little scarier, but we usually use the hip as a site for our three-year-old, and we try to distract him when it is going in. When he doesn’t see the needle, he is fine with it.”
Not taking bolus insulin
The most common nonmechanical problem that occurs with pump use in children and teens is that they intentionally or unintentionally forget to take their bolus insulin doses. It should be so easy to do, particularly since all current pumps (if correctly programmed) have the ability to determine the right bolus dose of insulin, as long as the user enters his current blood glucose level and the number of grams of carbohydrate he is going to eat.
But sometimes kids don’t feel like taking those steps, they get distracted, or they forget. So when you see your child having episodes of very high blood glucose, the first thing to check is whether one or more bolus doses have been missed. Either look at the bolus history on the pump’s display screen, or better yet, upload the information from the pump to a computer and look at the data in graphic form. Most often, when you look at the uploaded data, you can clearly see when bolus insulin was given and when it most likely wasn’t.
If boluses are being missed, you may need to take some action such as setting reminder alarms on the pump or taking away privileges until boluses are remembered and taken.
Hints from Parents:
“When I looked at her data, I was very surprised to see that Sarah was not often taking her breakfast bolus. I remind her every day! She tells me that she has or will take it, but it clearly was missing in the breakfast bolus data. The school calls every day at lunch with a high reading, and we’ve been increasing her basal rates. My advice to other parents is not to be naïve about it and check the pump or uploaded data often to see what is going on.”
“I think that after a while on a pump, life becomes more normal, and the kids start feeling or pretending that they don’t have diabetes. They think they can get away with not taking their bolus insulin, but it shows up later. When we realized that our son (age 16) was not taking his boluses, we took the car keys away. Funny how that reminds him.”
“We have gotten into a habit of uploading Jenn’s pump data to the computer every Sunday. Actually, she does most of the work, then we look at it together. There is a lot of information that is kind of overwhelming at first, but if you pick out one or two charts to look at, and keep doing it, you get familiar with it and can pick up changes from one week to the next pretty quickly. Jenn is getting better at it than me now and is kind of ‘into’ it. The hardest part for me is to try not to jump all over her when I see that she hasn’t done things right.”
Not changing site on time
All pump users are advised to replace their cannula, tubing, and reservoir (or pod) of insulin every 2–3 days and to insert the new cannula into a different place on the skin. However, it’s not uncommon for children and teens to get lazy or busy or to otherwise forget to change their sites at the recommended intervals. They may still have insulin in the pump (and you or they may not want to waste it), and of course they are not eager to poke themselves or take the time to change it. However, not making site changes at the recommended intervals can lead to skin infections and to high blood glucose, for a variety of reasons, including the following:
• The insulin in the reservoir and tubing is degrading because of warm body and outside temperatures.
• The tissue at the cannula site is saturated and cannot absorb additional insulin. After several days, a depot, or accumulation, of insulin develops under the skin; it can sometimes be felt as a hard lump. Insulin is not well-absorbed into the tissues from these depots.
• The reservoir is so low that there is not enough pressure to deliver the remaining units of insulin.
• The reservoir has been allowed to become completely empty.
Hints from Parents:
“We had a problem because in our scramble to get kids out the door to school in the morning, our son never remembered to change his site until it was time to leave for school. We had to write it on the calendar, and even then he forgot. We’ve been in the mode recently of doing it on the odd calendar days.”
“My son (who is four) doesn’t like to change or rotate sites. We just reason with him and explain why it has to happen. We’ve been trying some behavior modification techniques so that if he allows us to change the site without a fuss or tries a new site, he accumulates stars, and he is saving up his stars for little Lego Star Wars action figures.”
Disconnecting the pump
When your child is extremely active and/or involved in a contact sport, it is often best to disconnect the pump (if you use other than a tubeless pump). In most cases, the cannula can be left inserted and a plastic cap attached to it to keep it clean. This makes it possible to simply take the cap off and reconnect the tubing when you’re ready.
Recommendations for disconnecting include taking an hour’s worth of basal insulin before disconnecting, and not leaving the pump off for more than an hour. Even so, there is a window of time during which no insulin is infused, and practically speaking, many kids and teens stretch the one-hour rule as long as they can. This often leads to high blood glucose later.
Hints from parents:
“It can be a little tricky if you want to take the pump off for more than an hour, like when we go to a water park or the beach. We always keep it in a ziplock bag so sand doesn’t get into it. Usually we check blood sugar about every hour and 15 minutes and take some basal (maybe not the full basal) insulin every hour while he’s off his pump. That has worked best for us although it’s not perfect.”
“When you disconnect, always put your pump away in a purse, backpack, or somewhere where it won’t get lost. A pocket is not a good idea [pumps in pockets have been known to end up in washing machines], nor is a very hot car.”
“When we go to the beach, Jason is so active and such a water lover that he is in the pool or surf all day long. We have found it easiest for him to take an injection of long-acting insulin (Lantus or Levimir) for those days and disconnect the pump completely except for bolus insulin for meals or snacks.”
Not all kids do well with an insulin pump, and as these comments from parents demonstrate, switching to a pump does not reduce the diabetes self-care workload. For those families who are able to stick with it, however, the positives of pump use outweigh any negatives, such as the additional time and effort that must be put into learning new skills and trying different approaches to see what works best. Here are some parent perspectives on pump use:
“Pumping makes your child feel more like other kids. Not as much fighting over food issues. If they don’t feel like eating, they don’t have to.
“Learn as a family how to use the pump and how it works. Make sure everyone is familiar, so that your child is never on his own to make decisions.”
“Before you actually use the pump, make sure that you are familiar with all aspects of it and know how to change the tubing. Use all the pump features — you have paid for them!”
“Stay with a diabetes educator, nurse, or doctor you like and one who has a lot of pump experience. Do not see several doctors. You build a relationship, and they know and trust your instincts.”
“A pump is great for giving more freedom. If your child wants something to eat, he can usually have it as long as he boluses for it. However, we’ve found that it still works best for our daughter to follow a regular meal schedule.”
“Be careful not to give too much freedom with the diet. There is more flexibility with a pump, but diet is still important.”
“Try to be as exact as possible when counting carbohydrates: Read package labels for portion sizes and carbohydrate amounts, ask fast-food restaurants for nutrition labeling information, or check a carb-counting book or Web site. Whenever possible, measure portion sizes.”
“The pump is not to be used so that a child can eat whatever or whenever he wants. You should maintain a good and healthy diet with regular meals.”
“It is still important to keep good records to see developing patterns.”
“Uploading information has been really interesting. I can see what he is doing and not doing. Then I can step in and help when I see him faltering.”
“My two-and-a-half-year-old does much better with site changes than he did for shots. You can try Emla cream if your doctor will prescribe it for numbing, and that also helped.” Emla cream, a topical anesthetic, should be applied to the skin at the new infusion site about two hours before you change the site for maximum effectiveness.
“We don’t know whether or not it was psychological, but our daughter got much better about the site changes when we sprayed the skin with Bactine before the IV prep. Ice to the area also helped.”
“Our son found that at first he was way overtreating his lows when he started on a pump. We found that he now usually does fine with 3 or 4 glucose tablets or 5 ounces of juice. He doesn’t need to clean out the fridge any more to combat peaking insulin (such as NPH).”
“Pumping still requires time, record-keeping, patience, and diligence. It’s not for the faint of heart.”
“Don’t hesitate to call technical assistance for help if you have a problem or concern. We’ve had to call several times because we thought the pump might not be working right, or we couldn’t remember how to do something. They talked us through it.”
“At first it can feel overwhelming, like diabetes all over again. Don’t be overwhelmed by the pump. Once you master how to use it, it’s worth it!”
“It takes some work, but it is well worth the time.”
If you are considering having your child start insulin pump therapy, do some research first. Read about the features of the various pumps on manufacturers’ Web sites, and request a patient information brochure from pump makers that have them. Some manufacturers also sponsor pump demonstrations and informational sessions in various locales that you may be able to attend. Once you’ve gathered information from the pump companies, speak to your health-care providers, and talk to parents and kids with pumps about their experiences.
Be sure you understand both the potential benefits and possible drawbacks of pump use before making a decision about which way to go. Pump therapy is more likely to be successful if everyone involved — parents, child, and health-care team — supports it. And remember that kids and teens who do best with a pump have a parent who stays involved in a supervisory and supportive way.