TJ's Pump Story - By Debbie Schoonmaker mahalo@erols.com
TJ was diagnosed with Type 1 diabetes at the age of three during the last two weeks of August, 1993. So instead of spending the end of summer vacation in Myrtle Beach, South Carolina, he ended up in the hospital. To further complicate things, he was also diagnosed with severe asthma six months later! Now on top of insulin injections, fingersticks ,a restricted diet and schedule, we added nebulizer treatments and a peak-flow meter! I was so overwhelmed with his care that I pulled him from his nursery school class and my husband took two months off from work to care for him. He didn't return to school till the following September for Pre-K. Of course in time, we all got used to the regimens necessary to care for TJ. It was very frustrating because the two conditions together exacerbate each other. It was very difficult to try to moderate TJ's blood sugar levels. He could range from the 30's to the 500's on any given day. Whenever he had to take prednisone for the asthma, things would get even worse! TJ's insulin needs would double while on that medication and his blood sugars would still be high. For the whole time on two shots a day of four different insulins, his hemoglobin A1C's were in the 10-11% range. Despite such a difficult regimen TJ hardly ever complained, he was and is a very special brave boy.
We were always aware that insulin pumps were available but had little idea that young children were using them successfully. We had figured trying one when he reached his teenage years. But during time on the internet talking to other parents, I came to learn that kids TJ's age were pumping with good results. I became interested because of the hope of improved blood glucose control, a more flexible schedule and the idea that it would be easier to manage his diabetes when he had to take Prednisone. At first he did not express much interest, but after spending a week at the Joslin diabetes camp in Massachusetts, his interest grew. He had seen first hand, kids using pumps. At that point, I ordered the tapes and info from Minimed and Diestronic and the family all watched them together. TJ was still interested so after talking to his endo it was agreed that we would all have a trail period with a pump using a diluent(the stuff used to dilute insulin). It took a while to convince the endo that TJ was serious but he did and at Christmas time we took home a Minimed pump for two weeks. I wore it first, then my husband and finally TJ. He definitely did not like having the infusion set inserted but once it was in, he didn't seem to mind it at all. He wore it for three days and said to go ahead and get him one. In January, we put in an order for a "cool blue" Minimed. The Minimed rep was great and even helped the endo write the letter of medical necessity. Because our insurance company is notoriously slow, we didn't have the Minimed in our hands until March!
TJ's start-up date was set up for April 6th at the endo's office. This would be over his spring break and we hoped to have him pretty well set by the time he had to return to school. While our expectation was for a smooth transition, it was not to be! First there was a big disagreement with the endo on how to use the pump. TJ was the first patient going on the pump for this endo. The endo wanted to use Humalog in the pump because it offered more precise control than regular but also wanted a bedtime shot of Ultralente for safety. There was a concern over avoiding ketoacidosis in the event of pump failure or having the infusion set come out. TJ is a very active 8 year old. While I was willing to give this regimen a try, my husband could not reconcile himself to it. So, although we spent a week on the pump with a shot of Ultralente, we changed to a hospital clinic that had more experience with kids on pumps. (Although TJ is their youngest pump patient!) The insulin in the pump was changed that day to Velosulin and the Ultralente was eliminated. The very next day TJ came down with a high fever due to a sinus infection! I have to admit that while his numbers were not perfect they were better and it was definitely easier to deal with illness on a pump. After the antibiotics did their job, we had a few days of numbers in the mid 100's to low 200's which for TJ, is great, but as soon as he returned to school, he caught a bad cold which triggered the asthma to the point where prednisone was needed! Again the pump made it easier to deal with the prednisone's effect on his diabetes. On top of all this, TJ was experiencing difficulties with the softsets he was using! We were getting lots of no delivery alarms and one day, we had to change the set four times! TJ was upset and so was I! I had moments of questioning what we were doing. No one really prepares you for the flood of emotions that you experience....It was exactly like the time when TJ was first diagnosed and I felt like a basket case. The round the clock blood glucose testing added to my overall stress due to a lack of sleep! Eventually, we switched to using the silhouette infusion sets and once TJ finished his course of Prednisone, his numbers settled down again to more acceptable levels. We still get an occasional no delivery alarm but no where near the amount we had with the softsets. If your child is lean, I would start them with the silhouette even though the insertion is more difficult. TJ uses Emla cream to numb the site but we have discovered that an ice cube works almost as well. He has gotten much better during set changes, so much so, that he'll even allow a set change without anything to numb his skin! His spunk amazes me. After one month of pumping, TJ's A1C dropped from over ten percent to 9.7%, in spite of all the problems. Obviously we still have a long way to go, we are still working on his insulin to carb ratios, but his basal rates seem to be working ok. His blood sugar numbers are improving as we make small adjustments. Overall, we are glad we stuck it out. As TJ told his new endo, He likes most things about the pump but not everything. ( He stated that he hates no delivery alarms and is anxious for us to finalize his insulin to carb ratios so he can relax his meal schedule.......right now he's still on on a strict meal plan while we figure things out!) So while the pump, was not the easy, smooth answer to our prayers, it was/is an improvement that I expect in time will get better and better. TJ still experiences some swings low or high without a clear cause but not as many as on multiple injections. He was always difficult to control. We are looking forward to the day when things are more settled and we can take advantage of some of the perks that the pump offers like sleeping in late and not having to eat on a schedule. I imagine that with summer approaching (usually a time free of colds that aggravate the asthma!) we will soon be at that point!
Debbie and Timmy, parents of TJ age 8