The first day of school is harrowing enough for any parent of a young child. But for Mimi Delore, whose 5-year-old daughter, Olivia, was diagnosed with juvenile diabetes at 13 months, the day was especially unwelcome.
For almost the first time in four years, Olivia's fate was going to be out of her mom's hands. She wouldn't be there to monitor what Olivia ate, to test her blood sugar, to make sure her insulin levels were OK. It would be up to Olivia's teacher and school nurse to shoulder those responsibilities, and Delore wasn't taking the change well.
"I've been in control for the last four years, and now I have to go and meet a stranger and turn over eight or nine hours of her care to somebody else?" she says from her Taneytown home. "It was so nerve-racking for me."
Two months into the school year, and so far, so good, a relieved Delore says. But what she faces, forced to relinquish a measure of control over her child's life that could mean the difference between life and death, highlights the pressures faced by young children with diabetes and their families.
"It's an extra thing that needs to be paid attention to," says Dr. Debra Counts, director of pediatric endocrinology at the University of Maryland Joslin Diabetes Center. "The schools need to do exactly what the parents do."
Schools, she notes, have guidelines to follow that ensure diabetic children are properly cared for. But that doesn't necessarily make it easier for the parents.
"There are always parties in schools, for Halloween and this and that. Then, the parents have to be proactive and either send something or figure out something that their child can have. Maybe they'll need extra insulin, so they can have what everyone else is having. Again, it's an extra thing that needs to be paid attention to."
The school nurse must be available when the child needs to have a shot of insulin. The teacher must be aware of the child's dietary needs. And everyone needs to understand the extra monitoring the children require.
"I wouldn't call it stressful," says Gene Saderholm, deputy director of school health and support for the Anne Arundel County Health Department. "What I would call it is learning to trust one another."
Anne Arundel counts 234 diabetics among its 75,000 students in kindergarten through 12th grade. Nationally, Counts says, one in 400 children is diagnosed with Type 1 diabetes.
Reassuring parents, Saderholm acknowledges, is important. "We spend a lot of time working with them and with their doctors, making sure the children are comfortable coming to the health staff and that the parents are comfortable with the health staff."
Type 1 diabetes affects the body's ability to produce insulin, which is necessary for cells to absorb sugars and other foods. While rarer than Type 2, sometimes called adult-onset, diabetes, it is more often found in young children. Unmonitored, it can lead to complications including severe heart and liver disease, nerve damage and vision problems. Untreated, it can kill.
Health officials have been warning of a steep rise in Type 2 diabetes, largely thanks to the nation's chronic problem with obesity and Americans' increasingly sedentary lifestyles. That condition, which often is inherited and involves the body building up a resistance to insulin, is relatively rare in very young children.
Type 1, once referred to as juvenile diabetes, is caused by a combination of inherited and environmental factors; although there is a genetic predisposition for the condition, it is usually triggered by factors not fully understood by researchers. The New York-based Juvenile Diabetes Research Foundation says nearly 24 million Americans are diabetics; of those, an estimated 3 million have Type 1.
That number includes 6-year-old Ellie Clegg, who lives in Pasadena with her parents, Kristen and Rusty. Kristen Clegg remembers well the day Ellie was diagnosed at age 21/2, and the fear she couldn't shake.
"We just really quickly had to adapt to a new normal," she says. "The new normal was that she couldn't eat anytime she wanted to, that when she got a cold, we worried more than usual, because a little illness can trigger a much bigger illness with a diabetic child.
"For the first few months, we would monitor her, check her blood sugar every two to four hours. And then we would check her before bedtime, she would have a snack and go to bed, and then we would check her again in the middle of the night. It was like having a newborn again."
Researchers don't know exactly what causes Type 1 diabetes or how to cure it. But they do know how to manage it — by carefully monitoring blood-sugar levels, trying to keep them as normal as possible. That involves regular doses of insulin and careful monitoring of diet, especially carbohydrates.
Such monitoring is tough enough for older children and adults, who have to constantly watch what and when they eat, give themselves up to four insulin shots a day and check their sugar levels every few hours. For young children, such a responsibility seems both impractical and unfair.
While they're at home, children have their parents to keep an eye on them. "I am blood- and needle-phobic," Clegg says. "So for me, to have to take care of a diabetic child was …" She gropes for the right word and fails to find it. "But you find the strength to do for your child what you couldn't do for yourself."
At some point, that includes allowing others to care for your child. For Clegg, just like Delore, taking that leap of faith has been anything but easy.
"This is the first time that she's been away from me and someone else has been responsible," she says. "She goes to lunch every day at about 10 of 12. At 11:45, I kind of sit and wait for the phone to ring. I don't really relax until a few minutes after 12."
So far, Clegg says, the phone has rung only twice; both times, the issue was minor, the question simple. She's reassured, but still anxious.
"I don't know," she says with a nervous laugh, "maybe when she starts college …"
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