In late December of 1996, my daughter was diagnosed with juvenile diabetes, or Type 1 diabetes. Up until that point, she was always a healthy little girl who rarely missed school because of illness. Of course, there were ominous signs during that fall but, even though I was a biologist and had taken advanced physiology courses in graduate school, I had failed to make the connection between my daughter's increasing thirst, her late night visits to the bathroom, and her weight loss. My wife, my daughter's step-mom, had been expressing concern for our daughter's health for several months, but as an arrogant scientist, I just dismissed her concerns that anything could possibly be wrong with her. My wife, finally ignoring me, made an appointment to see our doctor a few days before New Year's Eve.
Given the symptoms, the doctor immediately suspected diabetes. After pricking my daughter's finger and placing a drop of her blood onto a small strip of paper that was then inserted into his small blood sugar meter, the meter was not able to read the amount of sugar in her blood; it was way too high. Our doctor sent us immediately to the hospital for a laboratory-based blood test. As I was leaving his office, he told me that this was likely an emergency situation. Driving the short distance to the hospital I believed that my world was coming apart. My daughter was only eleven years old, how could this be happening?
Laboratory tests indicated that my daughter's blood sugars were above 500 mg/dl, about five times the normal limit. Since it was a Friday afternoon, a few days before New Year's Eve and there was no hope for a crash course on how to inject insulin or even take care of my daughter's new dietary needs, she was admitted into the hospital. Within an hour her doctor was administering insulin to gradually begin the process of lowering her blood sugars over the next few days. Her doctor told us that we had done the right thing by bringing her in before she would have gone into a coma due to undiagnosed diabetes, a potentially life-threatening situation.
What followed was very foreign to me; adjusting insulin doses, daily injections, finger stabbing several times a day, and the possibility of insulin reactions. I was completely overwhelmed. I believed that my daughter's future was now in doubt and nothing would ever be like it once was. No parent wants their child to be saddled with an illness that can rob them of the best years of their lives. Fortunately, my wife was more pragmatic and eagerly learned what she had to do to care for a child that had now inject insulin to live.
After my initial shock began to fade, I threw myself into understanding this chronic disease. I learned that more than a half a million Americans have Type 1 diabetes with an additional 30,000 developing it each year. Unlike the type of diabetes that affects those in latter life, Type 1 is an autoimmune disease in which the body destroys insulin-producing beta cells found in the pancreas and usually occurs in children and young adults.
Insulin is required by the body to use sugar, the fuel that keeps us alive. People with Type 1 diabetes must inject insulin usually more than once a day to maintain their blood sugars between normal limits. And rigorous blood testing is required everyday. A recent large study indicates that maintaining blood sugar levels close to normal could reduce the risk of developing future complications.
Within a few weeks of diagnosis, my daughter quickly accepted her new regime of testing her blood at least four times a day and injecting insulin twice a day. Her teachers and classmates at her elementary school were supportive and her life mostly returned almost to normal. Since the onset of diabetes, more than two and half years ago, I estimate that my daughter has pricked her fingers more than 3,600 times to extract a drop of blood.
Life never did return the way it was for my wife and me. We know that with Type 1 diabetes, any day can take a tragic turn, and requires constant vigilance. We now live for the numbers, that is, my daughter's blood sugar readings. No two days are ever alike, although we have been fortunate in being able to maintain good blood sugar control. Still, almost anything can upset her readings--a cold, stress, exercise, adolescence hormones, or the food that she eats. Parents are a poor substitute for a healthy functioning pancreas.
Probably the worst time with this disease is when night falls. Both my wife and I fear that our daughter will have an insulin reaction in the middle of the night when we are both asleep. Insulin reactions occurs when there is too much insulin and too little food for it to act on and blood sugars fall dangerously low. The nervous system, including the brain, needs sugars to function. Without them, the brain begins to shut down and fainting and seizures follow.
We have had only one serious incident since diabetes became part of our lives. While I was away on a business trip, my daughter passed out while taking her morning shower. Although she tested her blood and ate a snack before she went to bed the night before, she fainted and went into a seizure anyway. My wife spent almost 45 frantic minutes bringing her back to where she recognized her surroundings again. Other families with diabetic children have had far worst incidents and my heart goes out to them. However, that one incident left us devastated for weeks. Both my wife and I don't sleep well any more.
I know that a cure is my daughter's only hope of ever living a totally normal life again, free of possible long-term complications like blindness, kidney and heart disease, and amputations. My wife and I hope that medical researchers around the world will soon find that cure.
It would be nice to get a good night's sleep again.
Don C. Schmitz
Don receives e-mail at [email protected]
Published June 13, 1999
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