A few years ago, teenager Amy Johnson of Kansas City, Mo., was at a pet show with her family. When Amy, who has type 1 diabetes, began to feel sick, she checked her blood sugar. It was too high, so she used both her insulin pump and an insulin injection to try to correct it, both to no avail. After going to the emergency room, she ended up in the pediatric intensive care unit. She recovered -- but the episode rattled her family.
This fall, with 18-year-old Amy in her first year of college, her father, David, an engineer with Hewlett-Packard, is worried how she'll cope with alcohol, drugs, and adjusting to college life. With Amy, there's another kind of concern, too, since she has a chronic illness.
"She's mature and she's very upfront about her disease," Johnson says. "We're sure she'll take care of herself. But if her blood sugar drops, it can be life-threatening. That's hard to stop thinking about."
Having a child with chronic illness can be worrisome and exhausting. And when that child becomes a teen, the worries can get bigger because kids at that age want -- and need -- more autonomy. But when a teen has serious health issues and needs to be vigilant in managing them, letting go can be scary.
A Chance to Be a Normal Teen
Twenty-seven percent of American children have a chronic illness. And because of modern treatments, those children can now lead long, productive lives, says Ron T. Brown, PhD, a leading pediatric psychologist specializing in children and adolescents with chronic illnesses, but that can raise additional challenges.
In some cases, kids have to deal with the side effects of treatments, such as weight gain or low blood sugar with insulin. In addition, many teens with chronic illnesses can fall behind in school from too many doctor appointments and not feeling well. Still, chronically ill teens have to take time to be teens. "Children need to be as normal as possible," Brown says. "They need to be with peers and try to fit in."
In her new dorm room, Amy is near a hospital and a doctor and has talked with her roommate, suite mates, and other residents on her floor about what to do if she is acting strangely or passes out. David says, "It has only been a few weeks since she left, but so far, so good."
Tips for Parents of a Chronically Ill Child
Teaching your teen learn to manage her own health is a huge responsibility -- and a crucial one. Follow these tips for a smoother transition.
Talk about it. "We talked to our daughter about her diabetes and her care all the time," David Johnson says. "We were constantly sharing information."
Find support. It's not just kids who need support. Amy Johnson's parents joined online groups and attended conferences. "We learned there are lots of people out there in the exact same situation,"Johnson says.
Stay involved. When the Johnson family toured college campuses, they didn't interview just teachers and students; they talked with doctors at the campus hospitals to learn who would be available to provide care if their daughter needed it, Johnson says.
Take heart. "We know chronic illness doesn't necessarily lead to maladjustment," says Brown, who is also provost and senior vice president for academic affairs at Wayne State University in Detroit. "Children can be saddled with the most devastating of chronic diseases, yet still do well emotionally."