Finding Hope - Kathy's Story
Kathy's Story
My daughter M was diagnosed on Monday April 5, 2004. It was the first day of spring break and we were camping at a local lake, within about 40 miles of the house. I had gone into work that Monday for a couple of hours, mostly to call the pediatrician for an appointment because we suspected diabetes. M was 6 years old and had been drinking a lot of water and having to pee quite often. Her cousin and uncle have type 1 diabetes so we were aware of the signs and had our suspicions. Of course the doctor told me to bring her in, so I went to the camp ground rounded her up and took her in.
Once we got there they checked her urine for ketones. In hindsight it seems a bit strange to check that first, but frankly I just don’t think they knew where a meter was. She was off the chart, so far off the chart that my first thought was that she didn’t have diabetes! When I realized I was misreading the stick my hopes were dashed. I really knew better though. They found a meter and some strips and her blood sugar tested at about 250. The pediatrician called the pediatric endo and since M’s BG wasn’t extremely high, they let us go home (to the campground) and we made an appointment to see the pediatric endo the next day.
Once the whole family arrived the next day at the pediatric endo’s office, they confirmed that she had diabetes and we pretty much hung out in their office for most of the day, crying and having our worst fears allayed. Steel Magnolia’s was haunting my every thought. I wanted to know if she was going to be able to have babies. I was scared to death of long term complications; would she go blind, would her limbs be at risk? We were told that she could lead a normal life and that complications could be avoided with good control. What about all this time that we didn’t know she had diabetes and she had been running high, had we damaged her? The ped-endo reassured us that there was no evidence that kids running high at a young age caused any permanent damage.After hanging out and talking for quite some time, they let us run out to the snack shack outside the office building and run around a bit and then after having a snack and returning they tested her and she was over 500. They gave her her first injection there in the office and we went home to take showers and decompress. M, after running high for weeks, felt really “low” after that first dose of insulin kicked in. We didn’t know at the time that that was what was going on, we just knew that she was crashing and it was a bit of a panic. She didn’t actually test low, it was just her body reacting to the insulin and coming down so quickly that made her feel low. Of course we called the doctor’s office in a panic, and they told us to go ahead and treat it like it was a low, so we gave her some juice, and then she took a nap. After awhile we went back to the campground and told our friends that we were camping with that M had diabetes. We went back to the doctor’s office the next day to learn more, and then one more day after that. Thankfully we never did have to spend any time in the hospital. We learned how to count carbs and to give injections in the ped-endo’s office. Our appointments were then stretched out to once a week, then once a month, then every three months.
Even though M was honeymooning we were able to get approval for a pump because she was so sensitive to insulin and her BG’s during the night rose so high but then dropped to normal right before getting up. We couldn’t fine tune that with injections so we were able to get approval for a pump after being diagnosed for just a few months. As soon as we got the pump and were doing basal tests and determining carb ratios, etc, she quit honeymooning. It was so frustrating, we couldn’t figure out what was going on for the longest time, and then we (the team) realized that she was using more than twice the amount of insulin than she had been using when we first got the pump, so we quit beating ourselves up and finally started to get a handle on things. We were on the pump before she started school that fall.Her attitude is amazing. She has taken this whole thing in stride and has only complained once, when she was sick early on. She had a stomach bug of some sort and was throwing up and I was hovering, almost panicked, because I knew that her blood sugar could go high when she was sick so I couldn’t forgo the insulin, even if she couldn’t eat. So I was forcing her to drink sips of regular (full sugar) flat 7-up, or Gatorade, and it was making her throw up, but she’d had her shot and I was so afraid that she’d go low, and she told me that it wasn’t fair that she had diabetes and was sick. We cried. It wasn’t fair.
She tests in class at school and boluses with her pump without missing a beat. She even has her friends push the buttons on it to deliver the insulin. She does get embarrassed around kids she doesn’t know, in new situations, to test and bolus in front of them. Kids tend to stare and whisper. But after the first week or two of being with new kids in class or on a new soccer team or softball team, they all get used to it and it’s no big deal. For the most part things go pretty smoothly, but every once in a while you’ll get a well meaning but ignorant person who will do or say something that is hurtful. We try to educate folks, but sometimes people don’t want to hear it.My biggest concern these days is for her mental health. I’m scared of the teenage rebellious years, of her getting burnt out and not wanting to deal with it any more, of drinking. She has always been responsible, a teacher’s pet, likes the rules and follows them kind of kid. Don’t get me wrong she has opinions and isn’t afraid to voice them, but she’s a good, happy kid. I just want her to stay that way.
