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.

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.

In Ventura County, there are about 60,000 diabetics, half of whom are Latino, according to the local chapter of the American Diabetes Assn. Between January and June of last year, county statistics show that diabetics accounted for about 7% of hospital stays countywide, and many were also treated for illnesses such as heart disease and stroke.

While the number of diabetic children isn’t known, some of the county cases involve Type II diabetes, which usually occurs in overweight adults age 30 or older, often can be controlled--and is sometimes reversible--through diet and exercise.

Type II diabetes is rare in children, but two years ago pediatricians at Landon’s clinic identified more than a dozen youngsters in the county--all of them Latino--with that form of the disease. After the clinic received a National Institutes of Health grant to study the problem more carefully, testing at numerous county high schools this year revealed that one in six Latino students had some elevated blood sugar level. Physicians suspect as a cause a combination of genetic and dietary factors, as well as inadequate medical care.

But with either type of diabetes--both of which carry the same health risks--Landon said children need to manage the disease. What that involves, however, is usually a lot more than many people imagine: Besides addressing physical concerns, it’s also necessary to take into consideration the far-reaching emotional aspects of the disease.

“Our task now is to institute the findings of (the American Diabetes Assn.) study,” Landon said last week. “But the question before us is: How do we make that happen? It’s hard enough to get adults to do it, but how do we get these children to test their blood sugar three and four times a day and to understand the implications of not controlling their sugars?

“If you’re 5 and someone says you may lose your eyesight and kidneys in 15 years if you don’t (control your blood sugar), that’s pretty hard. And teen-agers in particular have no fear of death, no sense of mortality. Those are the groups with whom we have the most problems. How do you reach them?”

One method, obviously, is to make health care accessible, which the Pediatric Diagnostic Center did when it recently opened a diabetes clinic for families who otherwise couldn’t afford the care.

Another way--which took place last Saturday on a fog-enshrouded hillside overlooking Malibu--is to show families and children that they are not alone. That there are others who are experiencing the same daily struggle. That what may seem like an impossible and overwhelming demand on the entire family can get easier.

“If I can save one kidney transplant, one case of blindness, one gall bladder or having to have a leg amputated by educating them when they are 10,” Landon said, “it’s worth the effort.”

‘Camp Time Away’

The road leading up toward the Circle X Ranch from the Pacific Coast Highway doesn’t wind through the mountains; it coils like a telephone cord. At 25 miles an hour, a small caravan of cars makes its way up the road in the dense, early morning fog, occasionally braking around the uphill curves.

Except for the scrub brush, manzanita and aloe plants along the road, the most visible sight is Sandstone Peak in the distance, which, half-obscured, appears to have been wrapped in gauze.

Near the base of the peak, the cars pull into a gravel lot. At the edge of it is a small wood cabin--a Santa Monica Mountains ranger station--and beyond it, down a dirt road and temporarily out of sight, is a larger house overlooking the canyons.

This is the location of what Landon and the local chapter of the American Diabetes Assn. have billed as “Camp Time Away,” a free, 10-hour opportunity for diabetic children to learn how to cope with the daily aspects of the disease, as well as for families to network and gain support from each other.

“When I heard about it, I immediately said I had to go there,” says Mirza, who has come this morning with her son Michael, her 17-year-old daughter Heather and her husband. “You feel like you’re the only one in the world dealing with it.”

Dr. Richard Brand, an Oxnard physician who himself has diabetes, steps out of his four-wheel-drive wagon with his non-diabetic son, Mitchell. Brand, along with Landon, will be leading half of the kids on short hikes throughout the day and offering advice to family members.

“Diet is the hardest thing to teach,” Brand says as he walks down the hill toward the ranch house, where several families already are gathered around the large stone fireplace in the center of the main room. “There’s a lot more to it than not eating sugar.”

The families in the room illustrate what physicians tell their patients: Although Latinos nationwide have a significantly higher incidence of the disease, diabetes has no respect for gender or socioeconomic class.

Educating the Parents

There’s Crystal Lopez, an 8-year-old Latina from Oxnard who came to Landon’s clinic a few days earlier with her grandmother. At the clinic, the grandmother explained that Crystal, diagnosed with Type I diabetes three years earlier, was having problems with her blood sugar levels, which were fluctuating wildly. The problem, she said, seemed to get worse on weekends when Crystal visited her mother, with whom the girl no longer lives.

“The mother likes soda and papitas (French fries),” the grandmother explained to a physician at the clinic. “And there is the truck that passes by the house with ice cream and candy and it plays music. The other children run out to it, and Crystal wants to go too.”

“Would Crystal’s mother be willing to talk with an educator?” the physician asked.

The grandmother cocked her head to the side. “I hope so,” she said.

Today, standing before the fireplace of the Circle X Ranch is Crystal’s mother, in her early 20s, who also has brought her 3-year-old son.

Also attending the day camp is 8-year-old Blake Evans of Ventura, his mother Mary Lynn Evans and his 10-year-old brother Brian. Blake found out that he had diabetes a year ago, and has only met one other child with the disease since then.

“He’s sad, and he really wanted to meet other kids with it,” says Blake’s mother, who works full time as a hairdresser. “I’ve only met one other parent of a diabetic child in an entire year. I tried to find a support group, but there isn’t one. So we’ve kind of been bumping along.

“You think it’s just going to be checking their blood and giving the injections, but that’s such a small part of it,” she says. “It’s a 24-hour thing. You have to train everyone who’s around your child--I rely on child care--and it’s terrifying. You just have to pray.”

Other children, who have overcome many of the most difficult early emotional adjustments, seem to provide a kind of buffer. Eleven-year-old Allison Sweeney of Simi Valley says she’s heard about diabetic children who sneak sugary foods or write down incorrect numbers in their daily medical journals. She speaks with a gravity, a kind of maturity, that one rarely encounters in a child so young.

“I know I have to do this right or I can die,” the golden-haired girl says. “It’s not simple to do, but it’s as simple as that.”

Altogether there are 24 children, including siblings, and half as many adults.

At 9:30, they are paired off into two groups by Landon, who informs them that they will be taking a 45-minute hike down one of two trails into the canyon below. The children are given fruit-juice-sweetened granola bars to take with them, along with small plastic water bottles filled with apple juice.

Exercise, Landon will explain later, naturally lowers blood sugar levels. Children who sit around in front of the television tend to have much higher sugar levels--and often require more insulin--than those who are active.

On the other hand, he says, any time a diabetic child exercises strenuously, it’s important to make certain that the blood sugar level hasn’t dropped too low. That can lead to severe hypoglycemia and coma.

Landon’s group of 12 children and seven adults heads down the grotto trail, while Brand’s group takes off in another direction. It’s steep going, and several children wearing tennis shoes occasionally lose footing and slip, laughing and seeming not to mind.

The view is calming: They pass flowering thistle, manzanita, oak trees and pockets of witch hazel. For several of the children, Landon says, it is the first time in nature. Some have never been outside Ventura or Oxnard.

Suddenly, Landon, dressed in black swimming trunks and a T-shirt, calls out to the group to stop and have a bite of their granola bars. As the children munch, he’s asked by one adult why he did it.

“Oh, you can just tell by looking at them,” he says. “They’re slowing down and kind of looking blankly all around, and that means their sugar level is going low.”

After walking down to a narrow bridge and then back up the same trail, the children once again reach the ranch house. It’s blood sugar testing time.

Parents open up the glucose monitoring machines that look like hand-held tape recorders. Some of the older children lance their own fingers, squeezing a drop of blood onto a test strip, while the younger ones are assisted by a mother, father or older sibling.

Most of the children have low readings, 50 or 60. That means it’s time to eat.

But for Allison Sweeney, the monitor flashes a disappointing final number on the screen: 254. Nearly twice what it should be. “Darn,” she says, shaking her head.

At noon, a table is laid out with healthy foods: salads, whole grain bread, meats, cheeses and fresh fruit. Later, after blood sugar levels are tested once again, any child or adult hardy enough to brave the chilly fog can go dipping in the pool.

Crystal and her mother will go in. Landon will spend his water time with various little arms wrapped around his neck as he paddles back and forth. And off to the side will sit the parents, watching their kids and writing down each others’ addresses and phone numbers.

“I just talked to one mother, and she said she didn’t clear the whole house of sugar,” says Mary Lynn Evans. “I did that, but she said she figures we live in a world of sugar, and her child is just going to have to learn to live in it.”

Landon, from inside the pool and with a child on his back, looks up and smiles at her.

He probably could not have said it better.