Caleb is a gregarious, high-spirited little boy with an irresistible smile. It’s no surprise his doting parents make a big fuss over him every time he has a birthday -- especially since he almost didn’t make it to his first.

At just over 11 months old, Caleb became inconsolably fussy, then began vomiting and turned listless and lethargic. When his alarmed mother Becky brought Caleb to the doctor’s office, the physician found no cause for his symptoms beyond the fact that he was teething and had a molar coming in.

But then, as an embarrassed, frustrated Becky began gathering her things to go, the doctor noticed Caleb’s unusual thirst. Presented with a few take-home treats -- a Pedialyte™ popsicle and a bottle of bubble solution -- he downed the popsicle in seconds and immediately began trying to drink the bubble mixture. On a hunch, the doctor decided to test Caleb’s blood sugars. The lab results told an awful story: Caleb had diabetes -- and his blood sugars were so high that he was on the very edge of a fatal diabetic coma.

Within an hour, Caleb had been brought by emergency transport to Duke’s Pediatric Intensive Care Unit. There, caregivers swarmed over him, hooking him up to sophisticated monitors and an array of intravenous tubes delivering insulin, nutrients, and fluids. After lingering in a twilight state until 4 a.m., recalls Becky, “He woke up and began crying -- and everyone began clapping." Once Caleb’s condition had been stabilized, the family, still in shock, began to learn what their son’s illness would mean for the long haul.

Diabetes has been called the “24-hour disease” because monitoring and managing it is very nearly a round-the-clock commitment. The type of diabetes that usually affects children, known as insulin-dependent diabetes mellitus (IDDM) or type 1 diabetes, is newly diagnosed in 11,000 to 12,000 children each year nationwide. (Although the “adult,” or type 2, diabetes now threatens to affect far greater numbers of children)

It’s not completely understood why some youngsters get Type 1 diabetes. Heredity, viral infection, and autoimmune disorders, or combinations of these and other still-unknown factors, are possible suspects. The harmful effects of the condition, however, are all too well known. Diabetes occurs when, for whatever reason, the pancreas loses its ability to produce insulin -- a hormone necessary for the digestion of nutrients and support of bodily functions -- forcing the body to break down stored fats and proteins for energy and allowing undigested glucose (sugar) to build up in the bloodstream. Over time, these high blood sugars can damage virtually every organ and system in the body.

To keep diabetic children healthy and growing, and minimize the risk of diabetes-related health problems later in life, their families must help them walk the tightrope between blood sugar readings that are either too high or too low. To achieve this delicate balance calls for an intensive daily program of multiple insulin injections, blood glucose tests, and careful diet management.

Understanding and experience are also key ingredients. Patients and families must realize, for example, that stress can raise blood sugar -- and vigorous exercise can send it plummeting. Not surprisingly, incorporating such a demanding regimen into their lives is an adjustment for most families.

According to Michael Freemark, MD, chief of pediatric endocrinology and diabetes at Duke, managing blood glucose levels in very young children with diabetes is a special challenge. "Due to their high activity levels and spotty food intake, these youngsters are very susceptible to hypoglycemia [low blood sugar], which can cause seizures, brain damage, or death," Freemark says. "Yet the symptoms of low blood sugar can be difficult for parents and caretakers to identify."

For nearly a year, Becky and her husband John tried to manage Caleb's condition with frequent finger sticks, regular insulin shots, and valiant attempts to measure his food intake. “And when half of the food we gave him ended up on his face, hair, or clothes, that wasn’t easy,” Becky laughs ruefully. “There’s no simple equation to use with diabetes. Controlling the relationships between food, insulin, and exercise is like trying to hit a moving target. So you just do the best you can.”

Despite their best efforts, however, Caleb’s blood sugars were on a metabolic roller coaster. He had 15 episodes of severe low blood sugar within five months. Even an evening of innocent fun, such as the night Caleb joined other kids in running around and chasing fireflies at a cookout, could make his blood sugars plummet and lead to a harrowing medical emergency.

So when Freemark asked Becky and John if they would like to try putting Caleb on an insulin pump, they were very interested indeed. Insulin pumps are small, beeper-sized machines that infuse programmed amounts of insulin into the body via a catheter placed through the skin. Sometimes used in adolescents and adults as an alternative to the traditional injection-based treatment of diabetes, they're rarely used in preschool children.

But Freemark and his team reasoned that, even if the children themselves were too young to cope with the mechanics of the pump, their parents and caretakers could manage it. Thus, at the age of 22 months, Caleb became the youngest of nine children to participate in a Duke study evaluating the use of insulin pumps in diabetic children under five years of age. Even with the pump, life is not exactly simple: blood sugars still have to be tested several times a day, and the pump needs regular needle changes and insulin refills, as well as occasional repositioning after vigorous play. (The unit beeps when problems such as twisted tubing occur.)

Still, says Becky, the pump has been a blessing. “We were on a constant treadmill of high or low blood sugars," she says. "Now we feel like we’ve gotten our lives back.” When Caleb began preschool, Becky taught his caregivers how to watch for signs of low blood sugar and check the pump. As Caleb gets older, life is becoming a bit easier: “He knows he has to eat what we give him, and he can tell us when he’s starting to ‘feel funny.' He's even starting to try to measure his blood sugars by himself.

“We’re so thankful for the doctors and caregivers at Duke,” Becky says. “They’re available 24/7, and so supportive and compassionate. The nutritionists have helped us figure out all the food questions. The social workers have even helped us explain to Caleb's big sister why he sometimes gets to eat sugary treats [because his blood sugar level is low] when she doesn’t."

According to Freemark, the other children in the study have also fared well: episodes of severe hypoglycemia among the youngsters declined by 80 percent, while average blood sugar levels decreased significantly. Though insulin pump therapy may not be suitable for all children, he says, “It can clearly be successful when parents are strongly motivated and can get comfortable with the technology."

Delighted with the progress Caleb has made, his parents remain even more optimistic about the future. “We’re always eager to hear about the progress of the research going on at Duke into new treatments for diabetes,” Becky says. “We’re basically trying to keep Caleb healthy until a cure can be found.”