BALTIMORE — The first day of school is harrowing enough for any parent of a young child. But for Mimi Delore, whose 6-year-old daughter, Olivia, was diagnosed with juvenile diabetes at 15 months, the day was especially unwelcome.
For almost the first time in three 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, Md., 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 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, Md., Health Department. “What I would call it is learning to trust one another.”
Locally, Valley school nurses seem to have the situation under control when it comes to their diabetic students.
Joy Reaser, school nurse at James F. Baugher Elementary School said before the school year begins, she works with parents to set up when the child should have their blood sugar checked and when they should get an insulin injection.
“We want to make sure the parents feel comfortable about their child being away from home,” said Reaser, who asks parents with diabetic children to tell the nurse what school menu items the child can or cannot have.
“Parents worry about other children giving them food in the classroom or cafeteria,” said the nurse. “They are putting them in a new environment. They wonder ‘will someone notice if there are symptoms?’”
During the holidays, Reaser asks parents what their children are allowed to eat when parties occur and usually cover themselves with an extra insulin injection.
Nationally, 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 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.
When the child enters middle school and high school, they are usually more able to understand when and how much insulin they need.
“A lot of kids don’t check their own blood sugar in early years,” said Reaser. “In older years they are able to do it themselves.”
However Carla Raup, school nurse at Danville Area Middle School has found the opposite to be true.
“The biggest adjustment in students is going from elementary to middle school because that’s when they begin to be more independent,” she said this is when students at Danville go from having one or two teachers per day to having seven. “The first week is scary for the parents, but after they see things work out, they feel much better.”
Raup also said middle-school age children tend to vary in terms of how much care they need.
“Some students are very independent,” she said. “They just tell me how many carbs they had and how many units they’re going to give themselves. Some do not give themselves shots, but for the most part, they all know how to check their blood sugar.”
When a student checks his or her blood sugar also varies between children, said Raup. Most check it before lunch, some check before they get on the bus and some check before they have gym class.
Some children are more sensitive and able to feel when their sugar is low and others aren’t.
And monitoring blood sugar levels at high school levels doesn’t change much, said a Selinsgrove Area High School nurse, who preferred her name not be mentioned.
“Sometimes (high school students) are not real compliant with their diet, so we have to remind them periodically,” the nurse said.
The only difference, is high school students are usually more adjusted.
“They come in when they need it, they take care of (what they eat) on their own and if they have trouble, they ask us.”
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 ...”