CHARLESTON, W.Va. — Willow Shawl doesn’t like to draw attention to her Type 1 diabetes. If a stranger asks about the insulin pump clipped to her jeans, the 10-year-old will say it’s an iPod. She will sometimes forgo checking her blood sugar levels to avoid the stares of her classmates as she pricks her finger.
So for a time in third grade — when she started coming home from school with unusually high blood sugar levels — her parents suspected she was slacking in her daily routine. Willow insisted otherwise.
It was two months before the Shawls discovered what they believe was the real cause: Willow’s teacher was making her do jumping jacks each afternoon when Willow’s levels were high, believing it would help lower her blood sugar.
But strenuous exercise can raise blood sugar levels, the opposite of what Willow needed at that moment.
For children with Type 1 diabetes, such misguided efforts aren’t unusual — Willow’s pediatric endocrinologist says he has heard all kinds of stories of classroom mishaps. Teachers aren’t generally trained to deal with the autoimmune disorder. And school nurses aren’t always there to administer insulin — their time is spread thin, sometimes across multiple schools, as U.S. children experience increasing rates of chronic illness.
In efforts to keep up, school nurses focus on helping the 116,000 children younger than 14 in the U.S. with either Type 1 or Type 2 diabetes manage their own health, something most get a handle on by second or third grade, says Brenda Isaac, the lead school nurse in the county where Willow attends school.
For parents grappling with a child’s new diagnosis of Type 1, this can be a nerve-racking time, indeed. The most help is needed in the months just after discovery.
Critical care
Willow was diagnosed just weeks before starting second grade at a public school. Her mother, Vicki, knew something was wrong on a summer road trip when her daughter needed to stop to go to the bathroom about a dozen times and was excessively thirsty.
The condition destroys the cells in the pancreas that produce insulin, forcing the diabetic to figure out when the body needs insulin by checking blood sugar levels throughout the day. If levels are too low, the diabetic might start sweating, tremble and feel hungry; letting high blood sugar go unchecked can lead to serious complications.
Willow’s mom was nervous sending her back to school. She even considered home schooling. Before Willow’s first day back, her mom had a two-hour meeting with the principal, Willow’s teacher, nurse and other school staff.
“Almost her entire second-grade year was full of change. Every couple weeks we changed something,” Vicki Shawl says.
Because Type 1 diabetes is considered a medical impairment, Willow’s parents were able to draft a care plan for the school, under a provision in the Rehabilitation Act of 1973. Willow’s plan involved her teacher keeping a blood glucose monitor in a drawer at her desk and reminding Willow to check her levels. Willow did the finger pricking herself, and the teacher would help discern if her sugars were high, low or within a normal range.
Only the school nurse was allowed to administer insulin shots, but when Willow switched to the pump, her teacher was allowed to dial in the insulin too.
The teacher was required to log Willow’s blood sugar level and know the emergency procedures if her sugar dropped dangerously low. Every two weeks Willow’s mom would send the log to the endocrinologist, who would make any needed insulin dosage adjustments, which were then relayed to the nurse and teacher.
“You have to take care of it or it will debilitate you,” says Willow’s dad, Mark, 41, who was diagnosed with Type 1 diabetes when he was 26.
The same goes for people with Type 2 diabetes. They can secrete insulin, but it’s not used properly in the body. Children with Type 2 diabetes need to be vigilant, but they can often control their blood sugar with diet and medication. Rarely in kids does Type 2 progress to having to inject insulin, says Beth Mayer-Davis, an epidemiologist at the University of North Carolina Gillings School of Global Public Health.
The support system
Willow needed four to six shots of insulin each day, which was made difficult by her skinny arms. Her school was assigned a nurse only one day of the week, but because Willow needed care several times a day, the nurse, Rhonda Crede, drove to see Willow at snack time and lunchtime. Crede kept in close contact with Willow’s mom by text, email and phone. She also juggled two more diabetics at two other elementary schools.
School nurses “play a critical role because they are the bridging gap between families and physicians. They pick up problems earlier,” says Dr. Sachin Bendre, a pediatric endocrinologist at the Charleston Area Medical Center in Charleston, W.Va.
Children with Type 1 outnumber children with Type 2 by more than 70 to 1, found a 2006 study in the journal Pediatrics. Researchers estimate that the incidence of Type 1 is growing at a rate of 2 to 4 percent a year. And only 22 percent of children with Type 1 diabetes use an insulin pump, according to a 2009 study. The rest rely on daily injections, making supervised care important.
As more kids need monitoring, finding suitable alternatives to an overbooked school nurse can be a challenge. Training nonmedical staff is a big undertaking and carries risks, but it might be the best alternative, Bendre says.
A substitute nurse, teacher’s aide or special education teacher can often supervise children checking their blood sugars or injecting or dialing in insulin, says Isaac. Even the bus driver should be informed, she says.
Though there is no national certification process for such school personnel, the National Diabetes Education Program publishes helpful guidelines, at tinyurl.com/44lfxqp.
To scope out care in the school system, parents of newly diagnosed diabetics can meet other parents in support groups — the Juvenile Diabetes Research Foundation has many chapters.
Isaac advises parents to find out who at school will be monitoring their child’s health. “Parents should never settle for an unsafe situation,” she says.
The day to day
Now in fifth grade, Willow rarely sees the nurse. She monitors her sugars and dials in insulin through her pump, if needed.
At school, “it’s hard because sometimes people look at me like I have four heads.” Once, her pump battery was low and sounded an alarm — to the tune of “Fur Elise” — during the middle of a test.
Some children tell a few friends about their diabetes and what to do in an emergency. Willow has a friend outside of class who also has Type 1. They dance together and both went to a diabetes summer camp. That camp, Willow’s mom says, is the one place she can be normal for a week.
As Willow goes into middle school, and nurses tend to the next young wave of diabetics, she’ll only be more responsible for her own health care.
“It’s sort of like ice skating,” she says. “It’s really hard at the beginning, but then you get used to it.”
Where’s the nurse?
There is no full-time nurse in 25 percent of U.S. schools, according to the National Association of School Nurses. Forty-five percent of schools do have a full-time nurse, and 30 percent have a part-time nurse. Although the number of school nurses grew 8.2 percent between 2004 and 2008, according to a study by the Health Resources and Services Administration, the ratio of nurses to students is pretty bleak in most states. West Virginia has one nurse for every 1,065 children, according to the National Association of School Nurses. The federal ideal is one for 750 students.
