Lilly Branka, 5, a kindergartner in Medfield, Mass., and Richard Zarate, 12, a seventh-grader in San Antonio, live in different worlds, but they have something in common: diabetes.
Until recently, almost all children had the type of diabetes Lilly has: type 1, the form of the disease caused by the immune system's destruction of cells in the pancreas that produce insulin. People with type 1, who account for 5 to 10 percent of those with diabetes, require daily injections of insulin to survive.
Richard and a growing number of children and teens have the more common form of diabetes, type 2, which used to be called adult-onset diabetes because it did not occur in children.
But the nationwide trend toward more high-fat food and less high-activity play has run smack into a genetic predisposition for diabetes in some communities, especially those with large Latino populations, sparking what pediatrician Jane Lynch of the Texas Diabetes Institute calls a "very scary, very alarming" epidemic of type 2 diabetes in children.
"We have close to 300 children we follow with type 2 diabetes," some as young as 7, Lynch says. "When I trained in the early '90s, it was essentially unheard of."
The increasing incidence of diabetes in children threatens to offset the benefits of improved diabetes treatment that have led to reductions in many of the disease's deadly or disabling complications.
Richard is being treated at the diabetes institute as part of a national study, Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY), and his mother, Christine Zarate, who also has diabetes, is grateful.
She had long suspected her only child, who she says always has been overweight, might also have the disease, because he had an area of darkened skin on the back of his neck, a marking doctors call acanthosis nigricans. It is often caused by high levels of insulin, which can occur when people are overweight and their bodies don't use insulin efficiently. The body tries to compensate for that by churning out extra insulin.
Zarate, who works as a private nurse, says she recognized the discoloration and knew what it meant. "I've tried to get him diagnosed since he was about 6 or 7, but the pediatrician he had at that time — I didn't have insurance — she never did a blood test on him."
Two years ago, at age 10, Richard began having symptoms, such as unusual thirst and frequent urination, and his mother checked his blood with her own glucose meter. The reading indicated Richard's blood sugar level was about five times higher than normal. She took him to the emergency room, where he was diagnosed and given insulin. They were told to see a diabetes specialist, but local doctors had months-long waiting lists.
The diabetes institute "was a godsend," Zarate says. As a participant in a clinical trial, Richard gets free diet and exercise counseling, medications and regular checkups. He is "doing wonderful," his mom says. He's taking two medications but is off insulin. "He's real careful, watches his carbs," she says. But "he's still a kid who wants to eat a hamburger."
Bleak Future for Type 2 Kids
For doctors, type 1 diabetes is familiar in children, but treating kids with type 2 is uncharted ground. Only insulin and the drug metformin are approved for use in children, but insulin as a first-line treatment can cause weight gain in kids who already are overweight, Lynch says, and metformin alone is often not enough.
In one arm of the TODAY study, children, including Richard, are given metformin and Avandia, a drug that improves the body's ability to respond to insulin and appears also to preserve the functioning of cells in the pancreas that produce the hormone. But Avandia has been linked to an increased risk of heart attack in adults. That hasn't been seen so far in children, she says, but they're being closely monitored.
"It's alarming to be in the midst of this," she says. "We are seeing here 7-year-olds, 8-year-olds with pure type 2 diabetes. They're very obese, and within five years, we're seeing kidney complications, we're treating 10-year-olds for hypertension, high lipids and having to see how (the drugs to treat those conditions) interact with diabetes."
Lynch predicts that by the late teens, many children with type 2 diabetes will be facing health problems that a generation ago didn't occur until midlife.
"We have children with declining (kidney) function who are 17," she says. "We've had kids on multiple drugs for high blood pressure who are 18. We find ourselves using a lot of adult medications," and studies have not been done to assure their safe use in children. "This has been a huge, scary learning curve for us in this study. We keep venturing further and further out on that limb."
Diet and exercise counseling have proven successful in the trial, but insurance companies may not cover the cost of a nutritionist or diabetes educator, "and it takes intensive education and reinforcement" to cause behavior changes, Lynch says.
"We definitely underestimate the degree of psychological and nutritional nursing support it takes to keep these kids on track."
A new wrinkle is that some children appear to have symptoms of both type 1 and type 2 diabetes, a hybrid known as double diabetes.
Dorothy Becker, chief of pediatric endocrinology and diabetes at Children's Hospital in Pittsburgh, who coined the term, says it's a combination of the failure of insulin-producing cells that is a hallmark of type 1, and insulin resistance, which is associated with obesity in type 2. If a child with type 1 diabetes is also overweight, whatever remaining insulin-producing cells are still functioning can't keep up with the greater need for insulin.
Schools Get Involved
Becker says her team has found up to 30 percent of type 1 children are overweight at the time of diagnosis and have characteristics of type 2 diabetes, including high blood pressure and high cholesterol. "This has increased over the last two decades," she says, the same time period when the national waistline has been expanding.
The Centers for Disease Control and Prevention, which is tracking diabetes in children, last year reported about 154,000 children have been diagnosed, the majority with type 1. How many remain undiagnosed is not clear, but doctors say both forms are increasing, and schools have noticed, too.
Many have taken steps to ensure that kids with diabetes get the support they need. The American Diabetes Association's Safe at Schools program trains teachers and school nurses to help young children monitor their blood sugar levels and administer insulin.
At Memorial School in Medfield, outside Boston, nurse Mary Ellen Zappulla went through the program earlier this month at the Joslin Diabetes Center to brush up the skills needed to help Lilly, one of two children with type 1 diabetes in the kindergarten class.
Each day, Lilly reports to Zappulla's office to get her blood sugar level tested and to adjust her insulin pump as needed.
"This is the first little girl I've had with an insulin pump," says Zappulla, who hasn't had any problems with the procedure. "These little ones are very knowledgeable" about their disease, she says. "She's very aware of her body" and knows when her sugar levels are off track.
But just in case, Lilly's teacher carries a radio device to call the nurse if needed.
In the Bronx section of New York, Montefiore Medical Center operates clinics in 15 schools where students are screened and treated for diabetes. The largest school health program in the country, it provides medical care to 15,000 students, and as part of a community health effort, it offers weekend and after-school nutrition, cooking and walking programs for students and their families.
"A big focus is prevention of obesity and exercise," says pediatrician John Leo. "We've opened a food co-op in the South Bronx, making available healthy food choices to the community," but it's "not a quick fix."
"We can diagnose overweight, screen for diabetes, strategize a plan to maintain or lose weight, but what's really important is educating the students and family about risk factors for diabetes and metabolic syndrome," a cluster of symptoms that puts someone at risk for heart disease, Leo says. "A lot of parents are not even aware their child is overweight."
The Perils of Processed Food
There are plenty of overweight kids in San Antonio, too, Richard's mom says. "They're obese because of the way people eat here. Too much fast food, and the Mexican foods we have here are made with too many processed things."
Zarate encourages Richard to take care of himself, but "trying to get him to eat vegetables takes an act of God and Congress."
Nor is he much for sports. "He's a video-game nut. I say, 'You want to sign up for basketball?' He'll say no." Her sister tries to get him to walk around the apartment building, "and he complains the whole time."
But doctors at the clinic have been impressed that Richard is "so cooperative. He takes care of himself," Zarate says. "It's because when he's not taking care of himself, he doesn't feel good. I said, 'It's up to you.' "