WEST JORDAN Since Joshua Black, 6, was diagnosed with type 1 diabetes three years ago, he has been poked in the fingers 8,500-plus times. His parents have also repositioned the needle to his insulin pump on his torso more than 350 times. And he's "kind of tired" of all of it.
But type 1 diabetes is not something that a little boy can wish away. So, his parents, Carrie and Jeffrey Black, are determined to help him control the disease to prevent serious complications and even premature death.
People with type 1 don't produce insulin, a hormone that converts blood glucose into energy. Without insulin, the glucose accumulates and that high blood sugar can cause a serious condition called ketoacidosis, according to the
Juvenile Diabetes Research Foundation. Left uncontrolled long enough, type 1 diabetes can lead to coma and death. To counter the disease, a diabetic must inject insulin, calibrated to factors such as what they're consuming, their activity levels and more.
The incidence of type 1 diabetes is growing worldwide, according to Dr. Mary Murray, medical director of the diabetes program at Primary Children's Medical Center. Utah is no exception.
"We don't know why; there's not a good explanation," Murray says. "There are a variety of theories that are helping to direct research activities."
While type 1 diabetes can occur at any time, child to adult, there are a couple of peaks around ages 5-7 and in adolescence. Recently, though, "the most frightening thing that pretty much everybody is seeing nationally is the incidence in young children under age 5 seems to be increasing more than any other age," Murray says.
Joshua fell into that category, diagnosed before he was 3. He wasn't potty trained yet and he was wetting constantly, which the Blacks knew were symptomatic of diabetes. He was always thirsty, another sign.
He was hospitalized for three days and they began a journey of education, learning about a disease that did not run in their family and what they must do to control it. By that time, Joshua had a baby brother, Jordan, not yet 1.
Some type 2 diabetes can be controlled without medication. Sometimes, it even goes away. Type 1 is forever, Murray says. "Once insulin therapy has begun, it may wax and wane a bit." She describes a honeymoon period after diagnosis when blood sugar can be controlled with little or no insulin, but notes it doesn't last forever. "It will increase again and insulin is required. There is no other therapy, except insulin, which must be injected."
Attempts to develop an inhaled insulin have so far yielded less than idea results, she says. The dosing is hard and so much depends on technique. As millions of asthma sufferers have found, inhalers are difficult to master. Many have "terrible or variable" technique, Murray says.
Joshua gets five shots a day and eats on a schedule. He came home from the hospital on a strict diet, his mom remembers.
While Murray says doctors don't require as tight control with kids as with adults, standards are still high because there are so many long-term complications, from eye damage to heart disease or kidney failure associated with diabetes.
Even with good control, there are no guarantees, she says. "You may still have some of the side effects. Or you can do everything horribly and avoid the side effects, if you have the right genetic background." Statistically, though, improved control decreases the rate of complications significantly.
Carrie Black says many things can throw off the delicate balance they've achieved with Joshua. Stress, virus, bacteria "it can all toss things out of whack." So can medicines for other things.
Carrie Black was worried when Joshua went to kindergarten, but his teacher was experienced with the disease. Her own daughter has it and that raised Carrie's comfort level. Now he's starting first grade in a few days and she's a little nervous. "My hands are tied in some ways. He's so young, if his sugar drops, he might not realize it soon enough. I plan to go at lunchtime, monitor his blood levels and give him insulin if he needs it," she says. All of the carbohydrates he consumes have to be accounted for, something his parents have become adept at, by this time. She's not sure she's ready to count on others to keep close tabs.
Joshua has an insulin pump, which provides a continuous small dose of short-acting insulin through the day. Last year, just in the Salt Lake area, Murray said, Primary Children's doctors started more than 100 children on pumps, which are programmed to provide a "background dosing of insulin to control glucose when they're not eating." Settings vary because the body's insulin need is not the same when a child is sitting at a desk studying as when he's out playing soccer. While a physician oversees that dosing, the goal is to educate the family so well that they can anticipate things that will change the insulin needs and make adjustments.
Joshua hates the pump, although it's small and unobtrusive. The problem is, other kids don't have it. And every three days, it has to be moved. He hates the poke of the needle into his skin yet again. Sometimes, he cries from a mix of pain and frustration.
He can't graze like other kids. When they trick or treat, for instance, Joshua can't come back and stash his cache to nibble on whenever he wants.
"It's moderation in all things," Carrie Black says.
Because he has type 1, not type 2, treats don't have to be sugar-free. "Sugar-free has as many carbs. We'd rather have natural sugars than sweeteners."
Murray believes the future holds dramatic change for people with diabetes. After all, in 1980, monitoring glucose levels hinged on testing urine, which was very inexact. Then meters came along and got smaller and cheaper so by about the mid-'90s, most everyone could afford them. And complications rates have gone down as control rates have gone up.
"With improved control, people are living long, healthy lives now," Murray said. Lifespan and quality of life are both improving. And though it requires more effort attending to glucose and diet, that's not a bad trade-off for a longer, healthier life.
There are new things coming, including other hormones made by the pancreas that may help control blood glucose levels, newer methods of monitoring them and different kinds of sensors. The hope is for a future closed-loop system where the sensor watches the glucose constantly, telling the pump what to give in the way of insulin. That would mean individuals would not have to pay so much attention to it. And it would reduce the number of needle pokes.
Joshua wants to be a pilot. And while his parents know that the career goals you set at 6 may not stick, it gives them pause. Can he be a pilot with type 1 diabetes? They can't predict what might be possible in the future.
The day he told them he doesn't want to be a diabetic anymore, they got involved with the JDRF. Each year they form a team for the Walk for a Cure. It's held on different days throughout the state, the schedule is online at jdrf.org/utah. The Blacks are walking Aug. 23."I can't do the research. I can't find the cure," Carrie Black says. "But I can support the agencies that are going for a cure."