by Tiffnay's mom, Jeanie Jlh5015@aol.com
Four years ago Tiffany was a very energetic 5 year old and it was a beautiful spring weekend when I started to get concerned. Tiffany was extremely thirsty, drinking two glasses of water at a time. I wasn't sure what, but I knew something was wrong. Three days later she was up 2-3 times during the night using the bathroom. I made an appointment on Wednesday, explained to the doctor what she had been doing through the weekend and the night before. A urine test was done (it took about 2 hours to get her to urinate in a cup). While we waited for the lab to send the results we left to get lunch and was told by the receptionist to be back by 1:00 PM, which we were. When we got back the doctor was real upset with us. She didn't tell us the results of the urinalysis, but said her blood had to be checked. Since we had eaten we had to wait 2 hours before her blood could be drawn. During this waiting process Tiffany didn't show any signs of being sick. She was bouncing around. We went outside where she was running and doing cartwheels. At 3:00 PM the results were back and when the doctor told me she had diabetes I about fell off the chair. Her blood sugar was 518. I knew nothing about the disease and couldn't understand what all the fuss was about. The doctor had 2-3 nurses hurrying around trying to get IV's put in a screaming 5 year old. Tiffany was admitted into the hospital and was there for 10 days. We are retired military and the statement "hurry up and wait" rang true in this situation. During those 10 days we had to attend classes, endure numerous finger pricks and insulin injections, and try to keep an otherwise healthy active child occupied.
I was so scared the day we were released from the hospital. I didn't feel ready to be in charge of taking care of a diabetic. Like I said I knew nothing about diabetes and the classes we had didn't teach enough in case an emergency arose. We were immediately put in touch with a ped's endo. who was great. Unfortunately he left the area after a couple of years and the new one wasn't as informative as the first. Leaving the check ups I always felt like I was on my own to deal with this disease. His favorite statement is " try it and if it works stay with it." I was always scared to increase or decrease her dosages. For 4 years I had questions that never seemed to have an answer. I asked how much insulin to give if Tiffany wanted a piece of cake. I was told, "I don't know. You will have to experiment with it and see."
Tiffany's HBA1c's were always in the normal range. It was the daily high's and low's I felt uncomfortable with. I started checking out the Internet for information and answers to my questions. It was getting close to Tiffany's 4 month check up in June 1999 when I started to read about the pump. At her visit I mentioned it to her doctor. He was supportive of the idea. Tiffany was totally against it because she wanted nothing to do with putting a needle in her stomach. The doctor gave us information and videos on the Disetronic and MiniMed pumps. When we got home I read the literature and we watched the videos together. I talked to Tiffany explaining all the good things about being on the pump. She still wasn't having anything to do with it. It only took a few days to finally convince her this would be the best thing to do. It was summer vacation and she hated to get up early to get checked. Another thing that appealed to her was the fact that she didn't have to eat breakfast if she didn't want to. During most of her third grade I had a fight on my hands trying to get her to eat before going to school. Some days I would have to send her breakfast with her to eat during class. I called the doctor's office and they took care of all the insurance paperwork. We had to keep a diary of what and when she ate and go to a couple of dietitian classes. It was during the first class that we learned about using emla cream. We had the doctor write a prescription for it and took it with us to the second class, where I had to practice inserting the pump. Without the emla cream this would have been more stressful than what it was. It was after this class that we were allowed to set an appointment to actually learn about and start using the pump. We have been pumping for 10 months now. Most of the time it has been good. Some of the bad times has been with the sets. We started out with the Soft-set because it was the quickest way of inserting. We had a hard time keeping it taped on when Tiffany got hot and sweaty. We just recently changed to the silhouette and like it a lot better. I tried to talk Tiffany into changing a long time ago, but she was too scared. About 2 months ago Tiffany had to retape her set after playing and getting sweaty. This happened right before she went to bed. I didn't realize the canala had come out and apparently she was without insulin all night. The next morning her blood sugars were over 400, she started vomiting and eventually had to go to the hospital and have an IV put in. That's when I took charge I told her we were going to the silhouette and she would have to get used to it. Tiffany has had to go through 2 surgeries in the past year. She developed nerve damage in her foot that was not caused by the diabetes. The first surgery was done while she was still on injections. She recuperated rather quickly and didn't have a lot of problems keeping her blood sugars in control. The second surgery was 5 months after going on the pump. This surgery was more intense and Tiffany was highly medicated for pain for a couple of days. She had no appetite. If she had not been on the pump it would have been a nightmare.
There are still days with unexplained highs or lows, but they are quickly and easily treated. Tiffany will tell me every once in a while she wants to go back on the shots. She's not really serious. She is still uncomfortable with the insertions. I know she enjoys the freedom the pump gives her. She is able to go places without me and she manages the carb counting and boluses really well.
I have used the term "we" when writing about Tiffany's diabetes. She may be the one with the disease, but I also have been living with the disease for the past 5 years. I would encourage any parent who has a diabetic child to think about the pump. It is not a cure, but it does make living with the disease a lot easier.
I really appreciate the different sites on the Internet. I have had to educate myself up to this point. If it were not for the Internet I would not know as much as I do. I finally find the answer to how much insulin is needed for a piece of cake on the Internet. A big thank you to all who do the research and make the information available.
Jeannie Jlh5015@aol.com