Dealing with kids’ health in school

Back-to-school time is stressful for every family, but for Heidi Hansen and her 7-year-old daughter Mabel, the start of each school year brings a host of new health challenges.

That’s because the Oshkosh, Wis., second-grader has Type 1 diabetes, which causes the immune system to destroy the body’s ability to produce insulin. Patients struggle to balance treatment and avoid risky swings in blood-sugar levels. At least 1 million people in the U.S. suffer from the disease, which is typically diagnosed in childhood and requires regular insulin injections, constant monitoring and vigilant attention to subtle symptoms.

Blood sugar can rise and fall precipitously within minutes, and the consequences of mismanaging the disease can be devastating. Patients can go into seizures and diabetic comas, and over time it can lead to kidney failure and blindness. Management of Type 1 diabetes “is unrelenting,” says Hansen. “We deal with it on a minute-to-minute basis.”

The struggle to keep close watch on a child’s medication, food consumption and blood sugar is hard enough for parents while the child is at home. But during the school year, the task typically falls on teachers, school nurses and the children themselves.

Worried parents resort to tactics like visiting school during the day to ensure a child eats lunch. Some have gone to court to enable a child to do blood testing in the classroom. Others tell of school officials who suggest that the illness is due to poor eating habits. (Unlike Type 2 diabetes, which is often linked to obesity, Type 1 is an autoimmune disease that cannot be controlled with diet alone.)

“Diabetes and school can be very challenging,” says Barney Softness, a New York City pediatric endocrinologist and Columbia University assistant professor. “It can be quite disruptive to the educational experience.”

Hansen’s story reflects the challenges parents face in keeping their diabetic children safe.

When her daughter started kindergarten two years ago, she assumed the school nurse would help monitor Mabel during the school day. But Hansen was surprised to find out the nurse often wasn’t there because she was serving seven other schools in the district.

As a result, the burden of coping with diabetes was going to fall primarily on the kindergarten teacher and on Mabel herself.

“My daughter was coming into kindergarten to learn her numbers. There was no way she could have checked her blood-sugar levels and made any decision regarding her care,” says Hansen. “You can’t give a child with diabetes the attention they need if you are a teacher trying to manage the needs of 20 kids.”

And so, when Mabel started kindergarten, Hansen went to school with her. She spent the day in a room not far from her daughter’s class so she would be available to check blood sugar, shift meal and snack times if necessary, and be available when the little girl felt sick and for extra insulin shots or potential emergencies.

To stay busy, Hansen offered to do volunteer work for the school. When she wasn’t checking on her daughter, she used her time sewing costumes for the third-grade play and laminating projects for teachers, among other things.

She also researched her daughter’s options.

Children with diabetes are protected by several federal laws and some state laws requiring schools to develop plans to care for students with special needs. Hansen decided to pursue a program under the Individuals with Disabilities Education Act, which taps federal funds to provide services to special education students.

Armed with letters from her daughter’s doctors, Hansen made the case that her daughter’s diabetes should be treated as a disability that would interfere with her ability to learn. She showed how letting her daughter’s blood sugar get too low caused vision problems, drowsiness and mood changes, while high blood sugar caused concentration problems and the need for frequent bathroom trips, resulting in missed class time.

After three months, Hansen prevailed, and the school received funds to provide a health aide to monitor Mabel every day in the classroom. The aide checks her blood sugar, makes sure the little girl eats the right foods and pays attention to subtle signs, like yawns or minor mood changes.

Over the past two school years, there have been many occasions when the aide has picked up on symptoms and found Mabel’s blood sugar to be dangerously low, Hansen says: “I believe if I didn’t have a health aide for my daughter, someone would have had to call 911 a couple times at least.”

The new school year means spending time with a new teacher, helping her understand Mabel’s disease and the need for a health aide in the classroom. It means preparing special low-carb lunches without the “kid food” like fruit snacks and potato chips that Mabel’s friends are eating.

A supply of blood- and urine-testing materials, emergency medicines, juice boxes, nuts and crackers is also sent to school.