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Teaching Children to Manage Diabetes : Pediatric Diagnostic Center in Ventura reaches out to local families by addressing physical and emotional concerns. Program shows youngsters, parents that they are not alone.

August 19, 1993|AURORA MACKEY | TIMES STAFF WRITER

Back when Susan Mirza worked as a registered nurse, she came to view the hand of fate with a certain detachment.

She'd watch as one patient would arrive with a nameless set of symptoms, as another listened numbly to a doctor breaking bad news, as another headed for home to a family struggling with what lay before them.

Always, though, Mirza was aware of an invisible but comforting curtain between the world where she worked and the one outside. At the end of the day, Mirza could go to her home in Moorpark. There, the other world didn't touch her.

But then, on June 23, the curtain between her two worlds lifted.

It began with her 5-year-old son, Michael, and a gallon of milk.

"He'd been at summer camp for just a week," said Mirza, who gave up nursing in 1986 when she married Michael's father. "I noticed he was drinking all this milk.

"Michael's always been very energetic, very athletic, and at first I thought it was just because he was running around and hot. But when I saw him drink an entire gallon, that's when it clicked. I called the camp and asked if he went to the bathroom a lot. They said, 'Yes, all the time.' "

Mirza's fears--and the symptoms she'd recognized--were confirmed the same day by her pediatrician, who tested Michael's blood sugar level at over 400, about four times the normal level. He was promptly admitted into Simi Valley Hospital.

The diagnosis: Type I, or "juvenile onset" diabetes.

With Mirza's medical background, the words carried with them a flood of sudden dread: It is a disease in which the body is unable to convert the sugar in food into energy. The resulting sugar then collects in the blood and urine and, over time, can damage every part of the body--the heart, blood vessels, kidneys, eyes and nervous system.

If her son ever hoped to stave off such symptoms, Mirza knew, he would have to regularly test his blood, have daily insulin injections, stay away from sugar and learn how to control the disease.

For the rest of his life.

But Michael had other ideas. This, after all, is a steely-willed 5-year-old, one who insisted on wearing roller-blades into the doctor's office and who then required three adults to hold him down.

A child who, faced with the prospect of injections and pricked fingers, still waves a baseball bat or hockey stick above his head and dares his mother to come near him.

A child who, much like every other diabetic child at some point, would like to open his eyes one morning and have this whole, very bad dream go away.

"You can't imagine how much he hates it all," Mirza said recently from her kitchen, as Michael darted from room to room before running upstairs to play with his pet gecko. "We literally have to chase him around the house and hold him down. Then he won't eat because he's mad, and I panic because I know he has to."

A moment later, she broke into a sob.

"I'm sorry, but everything bombards you all at once," she said. "My daughter cries because she says he's too little for this to be happening to him. Our insurance company is refusing to pay for any of it. I've tried to find some kind of support group, but there isn't one.

"I keep thinking what would happen if I had to go to work and couldn't be with him?" she said. "What if I was poor? What if I was a single mother?"

Mirza paused and then shook her head gently. "I keep wondering how we can possibly deal with this. How do other families deal with this?"

Study Backs Vigilance

How other families deal with a diabetic child isn't just a question asked by Mirza. It has been on the minds of parents, physicians and health educators since June, when the American Diabetes Assn. released the results of a decade-long study.

The report, published in The New Scientist, cut through a 50-year debate by medical scientists: Should diabetics closely monitor and control their blood sugar levels in an effort to minimize long-term complications? Or are the complications of the disease a result of the diabetes itself, and basically unavoidable?

The findings of the ADA's Diabetes Complication Control Trial were unequivocal. When blood sugar levels were controlled tightly, researchers found a 60% reduction in the risk of developing serious complications--including blindness, kidney failure and nerve damage.

What's more, the findings were seen in all categories of patients, regardless of age, sex or how long the person had had the disease.

Simply put, no matter who has diabetes, vigilance can prevent serious and often life-threatening complications later on.

For Dr. Chris Landon, director of the Pediatric Diagnostic Center in Ventura, the report in essence handed him an imperative to reach out to the community and help families better manage the disease. There certainly was good reason for it.

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