Schoolgirl’s case shows need for care team

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. Sometimes she’ll forgo checking her blood-sugar levels to avoid the stares of her classmates as she pricks her finger.

So for a while 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, even though Willow insisted otherwise.

It was two months before they discovered what they think was the cause: Willow’s teacher was making her do jumping jacks each afternoon when her blood-sugar levels were high, in the belief that it would help lower them.

But strenuous exercise can raise blood-sugar levels, the opposite of what Willow needed at that moment.

Such misguided efforts aren’t unusual for children with Type 1 diabetes -- Willow’s pediatric endocrinologist says he’s heard all kinds of stories of classroom mishaps. After all, teachers aren’t generally trained to deal with the disorder. And school nurses aren’t always there to administer insulin -- their numbers have been cut and their time is spread thin, sometimes across multiple schools.

And so these days 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 health. For parents grappling with a child’s new diagnosis of Type 1, this can be a nerve-racking time indeed, with the most help needed in the months after the diagnosis.

Here’s how one young girl, and her family and school, met the challenge.

The plan

Willow, who lives in Charlotte, Va., was diagnosed just weeks before starting second grade at a public school. Her mother, Vicki Shawl, knew something was wrong on a summer road trip when her daughter needed to stop to use the bathroom about a dozen times and always seemed to be thirsty.

The condition destroys the cells in the pancreas that produce insulin, forcing the person with diabetes to figure out when the body needs insulin by checking blood-sugar levels throughout the day. If levels are too low, he or she might start to sweat, tremble and feel hungry; letting high blood sugar go unchecked can lead to serious complications. (Children with Type 2 diabetes also need to be vigilant, though they can often control their blood sugar with diet and medication.)

Willow’s mom was nervous sending her back to school. She even considered home schooling her. Before the school year resumed, her mom had a two-hour meeting with the principal, nurse, Willow’s teacher and other school staff.

Because Type 1 diabetes is considered a medical impairment, Willow’s parents were able to draft a care plan for the school, a provision under 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, 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; later, when Willow switched to a pump, her teacher was allowed to dial in extra insulin.

The teacher was required to keep a daily log of 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 daily log to the pediatric endocrinologist, who would make adjustments to Willow’s insulin dosage. Her mom would relay the adjustments to the nurse and teacher.

“You have to take care of it or it will debilitate you,” says Willow’s dad, Mark Shawl, 41, who was diagnosed with Type 1 diabetes when he was 26.

“Almost her entire second-grade year was full of change. Every couple weeks we changed something,” Vicki Shawl says.

The support system

Willow needed four to six shots of insulin each day. 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 other children with diabetes 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. But not every child gets such careful attention.

Researchers estimate that the incidence of Type 1 diabetes is growing at a rate of 2% to 4% a year, and Type 2 diabetes rates are climbing in step with the higher rates of childhood obesity. Only 22% 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.

At a time when more and more kids need monitoring, finding suitable alternatives to an overbooked school nurse can be a challenge. Training nonmedical staff is big undertaking and carries risks, but it might be the best alternative, Bendre says.

A substitute nurse, a teacher’s aide or a special education teacher can often supervise a child checking his or her blood sugars or injecting or dialing in insulin, says Brenda Isaac, the lead school nurse in the county where Willow is taught. Even the bus driver should be informed, she adds.

Although there is no national certification process for such school personnel, the National Diabetes Education Program publishes helpful guidelines, which can be found at tinyurl.com /44lfxqp. And parents of kids newly diagnosed with diabetes can meet other parents in support groups (the Juvenile Diabetes Research Foundation has many chapters) to scope out the quality of care in their school system.

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 school nurse anymore. She monitors her sugars and dials in insulin through her pump if needed.

She pulls a glucose meter out of a small purse several times per day: at 9 a.m. before a snack, at noon before lunch and at 2 in the afternoon, plus any time she “feels” her blood sugar is low. After pricking her finger and getting a blood sample on a small slip, she “passes it into a slot in the reader like a piggy bank.” The number will tell her if she’s OK for now, needs insulin or needs a sugary snack.

She can eat foods, even sugary ones, brought in for birthday parties, but she needs the right dosage of insulin beforehand.

At school, “it’s hard, because sometimes people look at me like I have four heads.” Especially at those times when her equipment gives her away: Once, the battery of her insulin pump was low and sounded an alarm -- to the tune of “Fur Elise” -- right in 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, the one place Willow can be normal for a week, her mother says.

When Willow enters middle school, she’ll be more responsible for her care. But she has the drill down now.

“It’s sort of like ice skating. It’s really hard at the beginning, but then you get used to it.”

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health@latimes.com