Diabetes is the second leading cause of amputations in the United States. Though only three percent of the total population, people with diabetes account for more than 50 percent of non-traumatic lower-extremity amputations. However, doctors estimate that more than 75 percent of these amputations might be prevented by proper blood-glucose control and proper care of the feet. The potential savings in terms of human suffering and monetary resources are enormous - even more so when the victims are children.
When Tom and Starr McCarter learned in 1998 that their now 13-year-old son Zack had Type 1 diabetes, "it was devastating," says Tom, a 39-year-old graphic designer for The Knoxville News-Sentinel in Tennessee.
"I remember thinking, 'I can't do this,'" he says. "All of a sudden, we had to learn everything there was to know about controlling diabetes - about pulling up insulin, how to monitor his blood-glucose levels, knowing what the numbers meant and how to treat it, how much insulin to use, when to give him insulin, how to count the carbohydrates, how to treat a low blood-sugar reaction. It was like a nightmare."
Type 1 diabetes is often called juvenile diabetes because it is usually first diagnosed in children. Though the causes are unknown, it is believed that the body's own immune system destroys the insulin-making cells in the pancreas. Because the bodies of those with Type 1 diabetes produce little or no insulin and because insulin is necessary for life, insulin injections must be taken daily to metabolize food.
Though the prospects for the family were daunting after Zack's diagnosis, the McCarters could take solace in one thing: Even if they had recognized Zack's symptoms earlier, they could not have prevented him from getting the disease. It was no one's fault.
Adapting to a new lifestyle
From that time on, every carbohydrate Zack ate would have to be counted, his glucose levels would need constant monitoring, he would have to give himself insulin shots three or four times a day, and he would always have to carry a diabetes kit containing glucose tablets, a tube of cake gel, insulin, an insulin meter and needles.
"When the doctors told us that our lives would never be the same, we didn't know how true that would be," Tom says. The McCarters were suddenly expected to provide emotional support for their son; however, like most parents in such situations, they were still trying to deal with their own concerns and fears.
As it turned out, Zack would be the "rock" for the family. "What really got us through it was that Zack had as much courage as he exhibited," Tom says. He tests his own blood and has given himself every shot since he left the hospital. "It was pretty hard the first few times I had to give myself shots," Zack says, "but it was okay after that."
Although parents with diabetic children are encouraged to get their children involved in self-care early to develop independence and high self-esteem, families are also encouraged to be actively involved.
Once Tom and Starr got over the original shock of the disease, they became warriors in the battle to protect their son from diabetes and its complications. They help Zack by encouraging and supervising him, without being overprotective or nagging; by keeping an eye out to prevent or catch complications early, and by being involved in the struggle to find a cure for the disease.
The problems of puberty
Zack's generally positive, Tom says, but he admits that it's getting more difficult to keep Zack's glucose levels under control as he enters adolescence because of changing hormones, the stress of being a teen-ager, and the growth spurts associated with the period.
"For the first year and a half or so, we had really tight control - extremely tight control - of his sugar levels," Tom says. But things have changed. "We really lost control of his numbers for a while. We've just got so much going against us right now because of the hormonal things going on in Zack's body that can't be predicted, and it's really hard to work against those things."
The concerns
It's a problem they can't afford to ignore because keeping Zack's sugar levels tightly controlled is the key to his short- and long-term health.
Insulin shots, the right diet, and exercise are the three major components of blood-sugar control, and the family has to make sure that they are balanced properly. The pancreas normally controls this, Tom says, but because of Zack's situation, "we have to be his pancreas."
If any of the components gets out of balance, Zack may have a potentially dangerous low blood-sugar or high blood-sugar reaction. "Every night before I go to bed," Tom says, "I review Zack's sugar levels for the day."
With a low blood-sugar reaction, Zack may get a headache, become shaky and nervous, get dizzy, become weak and confused, have a seizure, or even lose consciousness. Sometimes, he will start to cry - a sign that his family quickly recognizes.
Usually he'll be okay within 10 minutes if he gets 15 grams of sugar immediately. If he isn't and becomes unconscious or has a seizure, it might be necessary to call 911. For this reason, Zack always wears a necklace or bracelet to let others know that he has diabetes.
When Zack has a high blood-sugar reaction, which is more dangerous in the long term, he might become irritable and excessively thirsty and his vision may become blurry. In extreme cases, he could become disoriented, have seizures or convulsions, go into a coma, or even die.
Saving legs and feet
High blood-sugar levels are more dangerous in the long term because they can lead to dangerous complications, including kidney disease, heart disease, stroke, blindness and diabetic neuropathy (nerve damage), which can make the legs and feet numb and cause people with diabetes to be unaware of injuries. Because diabetes also can weaken the immune system and damage blood vessels, even small injuries tend to heal slowly and can lead to gangrene and amputations.
To prevent this, Tom checks Zack's feet at least once a week. "We make sure he keeps his nails filed and trimmed," Tom says. If the toenails are not trimmed properly, they can cause hard-to-heal ingrown toenails or scratch his feet or legs and cause hard-to-heal wounds. "We also try to keep his feet dry and put lotion on them."
The doctor also checks Zack's feet every three months, and there have been no significant problems so far. "Now, it's more about getting Zack into good habits," Tom explains.
Zack typically wears skateboard shoes - a good choice for people with diabetes because they're well-padded and are made to absorb impact, Tom says. When the family goes swimming, Zack always wears water shoes.
Though it's sometimes difficult for the McCarters to walk the fine line between being protective and overprotective, now that Zack is getting older and learning more about diabetes complications, he is also becoming understandably more careful himself. His parents have rushed him to the emergency room on several occasions because he thought his kidneys were failing or he was having a heart attack, only to discover it was something relatively benign like a stomachache or heartburn.
Problems at school
Tom and Starr have to be ready to leave work immediately if Zack needs them. When Zack was having some behavior problems at school recently, Tom sometimes had to leave work to pick him up early and stay home with him.
"Those problems ended up being pretty directly related to his high blood-glucose levels rather than belligerence," Tom says. "When his numbers are high, his temper is volatile, and he gets upset."
Seeing their child experiencing these kinds of problems because of diabetes is difficult. "I've learned to just go one day at a time," Tom says. "You can't kiss it and make it better. This is something he has to deal with day after day and the reward of getting through one day is just to get up the next day and start all over again."
The search for a cure
The family wants more, Tom says; they want a cure. Tom is on the Board of Directors of his local Juvenile Diabetes Research Foundation (JDRF) and works with the JDRF to help organize events and raise money for juvenile diabetes research. In 1999, the family raised thousands of dollars for research in a fund-raising walk. Later that year, Zack represented Tennessee at the first Juvenile Diabetes Research Foundation Children's Congress in Washington, D.C., where he asked Congress for increased funding for diabetes research. While there, he met numerous senators and representatives, as well as several celebrities who have been affected by diabetes like Miss America 1999, Nicole Johnson; singer Tony Bennett; actress Mary Tyler Moore, and talk host Larry King.
Zack is also involved in the fight to find a cure, but Tom and Starr know that they are the ones who really worry. "I'm a parent," Tom explains, "so I worry * but with Zack, it's just something he deals with. I know that every year he has diabetes it takes a toll on his body and brings the threat of complications closer. It's almost in desperation that we want to find a cure before Zack has to have a leg amputated, or before kidney failure or any of the those other things happens."
Zack loves to act, draw, skateboard, and play soccer, and he dreams of being a professional skateboarder and a movie director. Tom and Starr are intent on making sure that diabetes doesn't stop him.
The family received some good news in December when legislation was approved that provided the largest increase in funding for juvenile diabetes research in history - from approximately $134 million in fiscal year 2000 to approximately $220 million in fiscal year 2001.
The family is extremely happy but is not ready to rest yet. "The big battle," Tom points out, "is embryonic stem cell research, and that's legislation that I'm working on with the Juvenile Diabetes Research Foundation." Tom sees this research, which is controversial, as the best hope for a cure, and he's pushing for it passionately.
"We won't settle for anything less than a cure," Tom says. "My vow to Zack is that no matter what comes, I'll be here fighting until we defeat diabetes. As long as his mom and I are alive, he will never face this bogeyman alone."
For more information about Type 1 diabetes, contact one of the following organizations:
American Diabetes Association
1660 Duke Street, Alexandria, VA 22314
Phone: 800/232-3472
Web site: http://www.diabetes.org
Juvenile Diabetes Research Foundation International
The Diabetes Research Foundation
120 Wall Street, 19th Floor
New York, NY 10005-4001
Phone: 800/JDF-CURE or 800/223-1138
