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The Dilemma of Diabetes

Some schools may have no one to administer crucial medications to children. Parents say the lack of care violates federal laws, but educators say they are hamstrung by a shortage of nurses.


Since January, Colroy Gordon's second-grade education has consisted of a few hours each week with a visiting teacher at his home. Colroy's mother is too fearful to send the Hawthorne boy to a school with no full-time nurse.

Nikki Marquez attends morning kindergarten in Los Angeles, but her mother hovers within five minutes of the classroom in case of an emergency.

Both Colroy and Nikki have Type 1 diabetes. Their survival 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.

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

In one recent case, a child with diabetes 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.

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.

Ignorance, Fear Compound Problem

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.

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

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.

Now, most school nurses have not felt it safe to train unlicensed people to give insulin because of the risks. A faulty dose of insulin could lower the blood sugar to a lethally low level, a situation that can lead to brain damage or death. Training is less of a problem with glucagon injections because the risks are negligible, nurses say.

"Some schools have a hard time finding a person on staff who's willing to learn," said Karlyn Bock, a school nurse in Ventura County. "However, when school nurses have an opportunity to educate the staff, then that can alleviate all the irrational fears and concerns."

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 of the body 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.

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