A Diabetic’s Dilemma in the Classroom

Five times a week, Donna Grieshaber’s pager buzzes at lunch time. A number flashes, and she either breathes a sigh of relief or grabs the phone and dials Santiago Elementary School in Lake Forest.

Grieshaber’s daughter, Alycia, is diabetic, and the first-grader must prick her finger with a small needle before eating lunch to test her blood-sugar level. A school aide watches Alycia in the office and sends the test result to Grieshaber by pager.

Parents of about 1,600 other students in the county, according to Children’s Hospital of Orange County, must also make arrangements with school officials to monitor diabetes.

The survival of these children depends on daily injections of insulin and, if they should pass out because of low blood sugar, a dose of another hormone called glucagon. Without these treatments, the children could suffer seizures or slip into a coma, possibly suffering long-term brain damage or even death.

Meeting the needs of these children can be difficult in cash-strapped school districts that don’t have enough full-time, registered nurses on staff to manage diabetes care. Instead, health aides or office managers are often trained in handling blood-sugar tests and injections, when necessary.

Though Grieshaber and others say they have found most Orange County teachers and principals cooperative, many parents nationwide whose children have diabetes contend that district officials are failing to meet children’s medical needs in violation of federal laws. School systems have stymied families’ efforts to manage this life-threatening condition in the safest, least disruptive way, parents assert.

The disputes illustrate the patchwork of policies that govern how schools nationwide deal with such conditions as diabetes, asthma and food allergies among children--all of which appear to be on the increase in recent years.

Second to Asthma in Kids

Diabetes affects almost two of every 1,000 people younger than 20 years old. In California, about 15,000 school-age children have Type 1 diabetes. Only asthma is more prevalent in the school-age population.

In one recent case, a diabetic child in Downey passed out at school. Rather than administer glucagon, school officials called 911 and waited several minutes for paramedics to arrive--an action that one prominent endocrinologist said needlessly endangered the child.

Some parents have challenged uncooperative schools. In Connecticut and Virginia, complaints filed in federal court were recently settled in parents’ favor. The districts were ordered to train staff to inject glucagon and to provide other services.

In the Connecticut case, which dragged through the courts for years before reaching a settlement, the parents of Katelyn Cross said school officials told them they could not allow the child to prick her finger to test her blood sugar level because other students might be offended by the sight. People with diabetes must test themselves several times daily to determine whether they need a snack or fruit juice to bring their glucose levels into line.

In addition to fights over such blood tests, parents and school districts have tangled over whether children should be allowed to wear insulin pumps--devices that eliminate the need for injections. Some school officials have banned them because they look like pagers. Other schools limit how many times children can go to the bathroom, although frequent urination is a symptom of the disease.

Diabetes, which is incurable, affects the body’s ability to produce or respond properly to insulin, a hormone that allows blood sugar to enter the cells and be used for energy.

Most affected students have Type 1 diabetes, also known as insulin-dependent diabetes, which involves a daily balancing act. The daily multiple insulin injections can cause too much sugar to cross cell membranes, resulting in abnormally low blood sugar levels.

Parents want their children to have immediate access to measures they need to control their disease--needles to inject insulin, for example. School officials, on the other hand, have become leery of procedures that involve blood and syringes because of the spread of AIDS and hepatitis and the fear of liability.

The key to overcoming such disputes is educating school officials who may have misconceptions about diabetes, said Mary Zombek, a coordinating nurse for the Orange County Department of Education.

For example, the small pins used to prick the finger are usually only an eighth of an inch thick and pose very little risk for spreading disease, she said.

Diabetic students who sip juice in class to raise their blood-sugar levels are not trying to bypass school rules prohibiting food in class.

New Guidelines Proposed

Zombek and other school nurses from Orange County have drafted guidelines for treating students with diabetes. Those include allowances for eating and blood testing in class, insulin pumps and trips to the restroom when necessary.

The nurses are waiting for funding to disseminate the guidelines throughout the county and may share them with other regions. Zombek said such guidelines may prevent legal actions similar to those taken in Connecticut and Virginia from plaguing Orange County schools.

In the meantime, individual parents like Grieshaber have advocated on behalf of their own children to make sure they receive proper care. While her daughter was still in kindergarten, Grieshaber approached her future first-grade teacher about diabetes, providing informational pamphlets and a home phone number.

“I wanted Alycia’s teacher to have the summer to read the information and call me if she had any questions,” Grieshaber said.

A week before school started, Grieshaber met with the teacher, principal and other school staff to work out a plan for Alycia, a process that takes place in all cases of diabetes in Saddleback Unified School District, said coordinating nurse Marilyn Ashwell.

Grieshaber said she was initially apprehensive about her daughter missing class time while testing her blood sugar levels in the office each day, but agreed to give it a try for two weeks.

It has worked out smoothly, and she said she is feeling much more comfortable leaving her daughter in the care of the school.

“It was terrible,” she said of her daughter’s first few days of school last September. “But after the first two weeks it was fine. Everybody knows who she is, and they know my pager number.”

Still, what might be ordinary for other children can become a red flag for Alycia.

When cookies or cupcakes are handed out for a class party, Alycia must be careful that they won’t elevate her blood-sugar levels. Her teacher usually warns Grieshaber ahead of time, and the two work out a way for Alycia to participate, usually by timing the treats with her lunch.

“I don’t want Alycia to ever feel different from the other kids,” Grieshaber said.

The Grieshabers’ experience does not jibe with the experiences of other parents nationwide, however.

“We hear horror story after horror story,” said Shereen Arent, the American Diabetes Assn.’s national director of legal advocacy.

Not Enough Nurses

Educators blame the problems primarily on a shortage of school nurses. But patient advocates say ignorance of the disease and fear of liability on the part of school administrators have compounded their difficulties.

Supported by many doctors and school nurse groups, the association is pushing for nationwide standards.

The group hopes to move more quickly in California. At the association’s urging, state Sen. Martha Escutia (D-Whittier) expects soon to toughen legislation that would guarantee what activists have long sought: the ability of children to test blood in the classroom and to receive glucagon and insulin injections as and where needed.

The legislation also would clarify that nurses can train unlicensed school personnel to administer insulin and glucagon.