When Lily was 12 - September, 1995 - Michael@Insulin-Pumpers.org
This article was written a year after Lily started pumping insulin.
Lily's view of diabetes: An essay written for school, January 1999.
Near normal blood sugar, with the attendant reductions in the associated long term health risks of diabetes can be a no-hassle reality for "ANYONE" with diabetes simply by using an insulin pump.
Of the dozen or so kids whose blood sugar levels I am familiar with, only my daughter Lily (she is the only one with an insulin pump) can consistently maintain near normal blood sugar levels on a day to day basis. The rest of the kids are lucky to be under 200 most of the time. All of these children (and their parents) seem to be either overwhelmed with the task of blood sugar management or in denial of the long term effects of diabetes and prolonged high blood sugar levels. This is no longer necessary with the advent of the insulin pump. Of the parents I have spoken to (and preached to) about the benefits insulin pump, all are in the dark about the benefits and ease of use. The universal response shows an overwhelming lack of information on the part of their physicians and unfortunately a complete dependence on those same physicians for treatment information.
My daughter Lily was diagnosed with IDDM just after her 11th birthday in July of 1994. Her life went from that of an idyllic average pre-teen - fun with her friends, burgers and sodas at afternoon barbecues, ice cream sundaes at Baskin Robbins with her family -- to HELL overnight. The normal diabetic regimen of twice daily injections, constant snacks, carefully orchestrated sleep and wake times combined with programmed periods of exercise needed to keep her blood sugar levels under 200 were taking an enormous toll on what had been a bright young adolescent. The blood sugar management regimen combined with other normal changes in the metabolism of an adolescent made blood sugar control difficult and Lily's life miserable. Lily was being treated at a world class children's medical institution that has an excellent staff of dedicated people. Unfortunately, those dedicated people new nothing about the pump. Through a series of fortunate coincidences I was able to find a treatment center with a large pump patient base and a friendly staff willing to educate our family about the "other" treatment methods for IDDM. In December of 1994, just 5 months after her initial diagnosis, Lily got a MiniMed 506 insulin pump and that day the sun came back into her life. Lily wouldn't go back to injections, snacks, etc... for all the tea in China.
Lily's first request 15 minutes after leaving her new diabetoligist's office with the pump installed and working was for lunch and a McDonald's apple pie. No problem -- program 3 units of insulin and enjoy the pie along with normal blood sugar. Sometimes Lily likes to stay up late on Saturday night and sleep in on Sunday like any normal kid; this means skipping breakfast (or actually eating it around noon and skipping lunch) not possible for a diabetic kid who needs to get up and inject insulin. No problem -- the fasting basal rate provided by her pump allows for skipped meals and NO SNACKS with nice even blood sugar levels. What was that breakfast anyway?? Hot cakes (or waffles) with REAL MAPLE SYRUP -- No problem, just bolus1.5 units of insulin for each hot cake with a tablespoon of maple syrup, as many as she wants. Lily now joins her brothers and sisters along with mom and dad at Baskin Robbins for a DOUBLE SCOOP HOT FUDGE SUNDAE. No problem -- program 6.5 units of insulin, enjoy and have nice even blood sugar levels! Lily is a class 1 soccer player and a member of a local swim team. On some days she swims for several hours at a time or plays in soccer tournaments that last all day, a simple cracker snack that provides her with 10 grams of carbohydrate an hour OR setting a lower temporary basal rate on her pump allows her the freedom to participate in strenuous activity one day and none the next without having to worry about excessive high or low swings in her blood sugar levels that would result if she were on a conventional management regimen. What could be simpler?
If the message is not clear by now since you've read this far, let me put it in perspective. If a 12 year old girl can handle day to day pump management and lead a near normal life including eating almost anything - anytime, an extra snack or bigger helping when hungry or typical teenage grazing in the afternoon, the ability to sleep in and skip meals when she feels like it, exercise or not when she pleases, and still manage to keep her blood sugar levels near normal (Lily's HbA1C hovers around 7 now that she's on a pump, her last was 6.4) why isn't "THE PUMP" for everyone?
Any oversimplification presented in Lily's story is more than offset by the improvement in the quality of her life. Sure it's not all easy. Lily must change her infusion line every few days as well as keep track of everything she eats. With each meal or snack she is estimating, calculating and adjusting the insulin required to keep her blood sugar levels in balance for the carbohydrate content of the food. She must test her blood sugar levels religiously. But it works and a 12 year old can do it !!! No more shots, no more scheduled snacks, the freedom to eat just about anything in any amount anytime, and still maintain good control is within the reach of almost everyone.