Pumping with Heather - Dave Harden DnBHarden@aol.com
Heather was diagnosed at age six, just before Halloween, 1995. She started on a standard regimen; NPH and a sliding scale of Regular at breakfast and dinner, and the ADA exchange system for Heather's diet. The strict schedule was very difficult on Heather and the family, since her dad worked irregular hours and a new brother joined the family a mere three weeks after Heather's diagnosis. On the standard regimen, Heather's BG control was never very good. Her HbA1cs never got below 9. During the family's basic diabetic training, the educators mentioned carbohydrate counting as an alternative diabetic regimen. Heather's mom, Barbara, had some experience with dietary management. The mediocre BG control and the tedious schedule led Barbara to explore carb counting. Nudging the rest of the family along, she started us counting carbs and set us on the long path that eventually led to Heather being put on the pump.
Heather's regimen evolved constantly over the next year and a half. We went to three, then four shots a day. We quit giving NPH in the morning, covering all Heather's meals with Regular. We gave up syringes for the Novopen. Finally, we switched to Humalog. These changes increased the flexibility of Heather's regimen, made her schedule and diet less strict, and improved the precision of her insulin doses, but her HbA1cs improved only slightly. Heather's attitude throughout the constant regimen changes and intense monitoring was outstanding. Her acceptance and ownership of her diabetes impresses everyone associated with her treatment. At seven, Heather was doing all her own finger pokes, calculating her own insulin doses (backed up by a parent) and giving all of her own shots. She enjoys teaching people about diabetes, and the attention diabetes brings her. Being different makes her feel special. (We thinks she's special, even without diabetes.)
Heather's health care team observed her attitude and dedication, as well as the relative lack of positive results with the usual management methods, and decided the pump was appropriate as Heather's next step. On 25 August, after pump training and a week on saline, Heather began using a Minimed 507. The pump has been a quantum improvement, particularly in terms of Heather's lifestyle.
The positive aspects of pumping.
Heather loves her pump. She dislikes shots, especially four shots a day, and much prefers the insertion of an infusion set once every three days. We use Emla cream to make insertions less painful, and the Comfort Set (due to a lack of body fat). Tape Skin Prep reduces the irritation of the tape and improves adherence of the sets. Heather doesn't mind having the set tubing attached, or having to carry the pump. Finding creative places to keep the pump has never been a problem.
The basal insulin has helped Heather's nighttime BG control immensely. We still have to tinker with her basal rates and carbohydrate ratios, but overall her control has improved. (As we write this Heather has been on the pump almost three months. We're still learning the nuances of pump therapy, and Heather's numbers continue to improve.) The capability of the pump to deliver insulin over time is extremely useful, as is the ability to infuse as many times as desired, without the pain of extra shots. We give Heather half of her insulin before the meal, and half after she eats. This allows Heather to change her mind during the meal about how much or what she eats. Inflexibility in her diet was one of Heather's major areas of resistance regarding her diabetes. Carbohydrate counting and the pump have done away with that problem! The speed with which Humalog acts makes the BG control cost of splitting the mealtime boluses minimal, particularly when compared to the level of regimen acceptance it produces.
The flexibility of pump therapy is consistently mentioned by pump users and salesman alike, and they aren't exaggerating. Heather has gone 18 hours without eating or insulin (except her basal), and not gotten out of her BG range. Likewise, she eats as much as she wants, when she wants, and what she wants (within limits. She's still an eight year old, and is subject to the same dietary restraints we apply to our non-diabetic child, i.e. healthy food vs. sugar-laden junk.)
Drawbacks of pumping.
Insulin pump therapy requires the desire for, and dedication to, fairly intense diabetes management. Numerous daily finger pokes and accurate record keeping are necessities. BGs can go high rapidly if infusion set problems occur, especially when pumping Humalog, which we do. Heather has had several infusion problems. One set came part way out, and one set apparently clogged shortly after the end of the third day. (We inadvertently left it in too long.) With Heather's 8 to 10 daily BG checks, we detected both problems and corrected them without incident, although Heather's numbers were high. Kids get dirty, and some protection of the pump is required. We solved a playground sand problem by wrapping the pump in a plastic bag before putting it in the carrying case. All-in-all, the positive aspects of the pump outweigh the drawbacks associated with it. Dispite some learning pains (i.e. several days of significantly elevated BGs due to less than optimal pump therapy) Heather's first pump HbA1c was her best ever, 7.2!
The Bottom Line.
For those considering pumps for their children, we highly recommend it. It has taken some extra time and effort, but the results have been well worth it. From our perspective, the normal responsibility reasons healthcare providers give for not putting preteens on pumps reflect an overly conservative attitude. The child needs to want to go on the pump. If they do not accept it, don't do it. However, if they are receptive to the pump, and you are willing to put in the time, there are few reasons not to get one. If the child can be trusted not to use the pump as a hammer (or a nail), jump into the water while wearing it, or randomly administer insulin, they can use a pump. Heather figures her own doses, just like she did with shots. And as with her shot therapy, we always confirm both her calculations and the amount of her dose. Parents are usually the best judges of their children's capabilities. If you think your child is ready for a pump, and they want it, do it now. You'll wonder why you waited.