THE DIABETES CAREGIVER: Juvenile Diabetes
Learning to keep a watchful eye on diabetic kids while instilling independent responsibility
BY:MARGARET FARLEY STEELE
The diagnosis of Type 1 diabetes is "a real crisis for a family," says Barbara Anderson, PhD, professor of pediatrics at Baylor College of Medicine in Houston. In 80 percent of cases, she says, there is no history of diabetes in the family, so the diagnosis comes as a shock.
Then, while the parents grieve the compromised health of their child, they must rapidly learn a new medical language and master the skills necessary to manage their child's condition—testing blood glucose levels, injecting insulin, counting carbohydrates and recognizing the signs of low or high blood sugar, to name just a few.
"It's a tremendous responsibility," says Dr. Anderson, "but many families do very well." Depending on the age of the child, families face different hurdles and adjust to new demands.
Getting Educated
Mary Ann Jones discovered her daughter, Cate, had Type 1 diabetes when the child was two. Cate had been to the pediatrician for a variety of complaints over the previous month. Usually displaying a sunny disposition, Cate had been unusually moody, frequently rubbing her jaw and crying inconsolably after her naps. The doctor ruled out an ear infection or a dental problem. Noticing the toddler's unquenchable thirst and excessively wet diapers, Mary Ann made the connection to diabetes and insisted that Cate get tested. "My husband's father died of complications from Type 1 diabetes when he was 44, and I always had that in the back of my mind," the Manhasset, New York, resident recalls.
In some ways, the diagnosis came as a relief. "Now I knew what was wrong and could begin to help her," she says. However, her husband, Chris, felt overwhelmed as he remembered his father's ordeal and what that could mean for Cate. But as the parents learned about diabetes management, they realized medical advances had made the disease "incredibly manageable," says Mary Ann.
The Joneses and their nanny attended diabetes-education classes together. The nanny chose not to give Cate any injections, so Mary Ann gave Cate her morning dose of insulin before leaving for Manhattan for the job she then held as an art director at Money. She would again administer insulin at dinnertime and bedtime.
Those first months were stressful. But their lives changed for the better less than a year later when doctors at the Naomi Berrie Diabetes Center at Columbia University Medical Center urged the Joneses to start Cate on an insulin pump. "With the pump, you can eat anytime and any amount," says Mary Ann. "Now we could go anywhere, and not have to say ‘no' all the time for things like birthday cake and pizza. It was wonderful," she says. However, their nanny of seven years quit because she didn't want to be responsible for supervising the pump.
Early-onset diabetes, the term for a diagnosis between infancy and the preschool years, poses special challenges for parents. Because the brain is growing so rapidly, maintaining constant blood sugar levels is essential. But children's rudimentary communication skills and unpredictable behavior make it difficult to gauge how a child is feeling. Is the temper tantrum the result of high blood sugar or the Terrible Twos?
As a working mother, Mary Ann found it a challenge "to be accessible to home every minute I was away, which infringed on my career." As a wife, she says, "the challenge is you are restricted in your social life." Uncomfortable about leaving Cate with anyone other than their nanny, and feeling some misgivings about being at work all day, Mary Ann was reluctant to go out with Chris in the evenings, especially in the first years of Cate's illness.
Finding Support
Peer support is especially important, advocates say. Mary Ann started a diabetes moms' group with three other families. "People need to network because there are so few resources out there for parents," she says.
Many parents never get a break, says Dr. Anderson, because training babysitters or daycare personnel to recognize diabetic symptoms is difficult. She notes that Internet and telephone support are invaluable for those who can't get out to meetings. She adds, "The more families are connected to one another, the better they'll do."
One site Dr. Anderson recommends is www.childrenwithdiabetes.com. Others recommend the Juvenile Diabetes Research Foundation's online diabetes support team.
Educating Others
As a child's social circle widens in the elementary school years, parents must educate teachers, coaches, tutors and other parents. Now 7, Cate is a second-grader at a local public school, where her parents negotiated what is known as a "504 Plan" [see Working with Schools and Camps] to secure needed accommodations mandated by federal law. Under this agreement between the school and Cate's parents, Cate has her own aide during school hours and a substitute for when the primary aide takes a break; a bus monitor to accompany her to and from school and a trained bus driver. "You have to fight and be an advocate for your child," stresses Mary Ann.
Only now is Cate allowed play dates, and usually at the homes of close friends or members of the support network.
Julie Ward of Orland Park, Illinois, took a somewhat different tack. She discovered that by coaching the softball team of her eight-year-old daughter, Sarah, she could keep a close watch on Sarah's glucose levels. And to Julie's surprise, she discovered coaching is fun.
Since her diagnosis at age five, Sarah has had some of the responsibility for managing her diabetes. Her pump has an alarm that signals her every two hours, alerting her to test her blood sugar at school. If the numbers are abnormally low or high, she knows to go to the nurse.
"You have to give these kids some independence," Julie says. "This is her disease."
Suzanne Leamer of Woodinville, Washington, works hard to help her son Derek, 7, feel like everybody else. "We try to make sure he's included in things," she says. "When other kids get a snack, he gets a snack."
It was the "first" of everything that was hard for the Leamer family, Suzanne recalls. The first Valentine's Day, the first Halloween—those occasions when candy is ubiquitous. Recently, though, Derek's insulin regimen was intensified, and Suzanne says that the additional injections—he now gets four or five a day—enable the sandy-haired first-grader to eat much more of what he wants.
For more on Kids and Diabetes, click on:
JUVENILE DIABETES: TWEENS AND TEENS
JUVENILE DIABETES: WORKING WITH SCHOOLS AND CAMPS
JUVENILE DIABETES: HOW TO MUNCH A HEALTHY LUNCH
JUVENILE DIABETES: BUILD ON KID POWER