Posted by Sandy Donchess on February 23, 2000 at 20:17:25:
I thought this was one of the better diabetes articles I've read...
Learning to live with kids' diabetes
An American Diabetes Association workshop teaches families with diabetic children how to control the disease
Monday, February 21, 2000
By Catherine Trevison of The Oregonian staff
WELCHES -- Molly Pettit remembers the cupcake with all the solemn intensity of an 8-year-old. It was the frosted, sprinkled finale of a friend's birthday party, one for each child at the table -- except her.
"When the mother of the child came to me, she gave me a kazoo -- because she thought I couldn't have sugar," said Molly, who still frowns at the memory.
Most people don't know much about insulin-dependent diabetes or the children who have it. But if Molly Pettit could teach them one thing, this is it:
With the right amount of insulin, she can have a cupcake, too.
For the estimated 1,500 Oregon children who have diabetes and their families, such misconceptions are one of many frustrations that come with a scary disease. Type I diabetes stops the body from making the insulin it needs to absorb glucose.
To hear how consuming it can be, ask any of the 238 children and parents who met Saturday and Sunday at the 12th annual American Diabetes Association Winter Diabetes Day at The Resort at The Mountain.
There's the fear of out-of-whack blood sugar levels that can lead to a coma. There's the fear of long-term complications such as nerve damage, blindness and kidney or heart disease. There's irritation with the world's ignorance of modern diabetes management. And there's the way the disease tampers with everything from dinnertime to driving.
Only about 123,000 Americans with diabetes are younger than 20, according to the National Center for Health Statistics. About 0.16 percent of children and teens get the disease. But when a child gets it, an entire family from siblings to grandparents ends up living with it, psychologist Dr. Richard R. Rubin of the Johns Hopkins Diabetes Center told the group.
It creeps up on families. They notice their child is urinating all the time but still unbearably thirsty. Or packing in food but still gaunt. Or irritable. Or tired. Or seeing the world with blurry vision. Almost every family has a terrifying tale of diagnosis, such as Jerry and Terra Shiffer of Silverton, whose son Andy was diagnosed last year.
They'd seen him dwindle, but they thought he was just shedding baby fat. They didn't realize he'd lost 34 pounds. One day he walked into their room wearing boxer shorts and looking like "a little toothpick" Terra Shiffer said. Their 5-foot-4 son was hospitalized at 84 pounds, with a blood sugar level that has put other chilren in comas.
"I had broken blood vessels under my eyes from crying so much," Terra Shiffer said.
After a diagnosis, a family learns about testing the child's blood with little needles and giving insulin shots with bigger needles. They learn that with control over blood sugar, their child can have a normal life. But achieving control means obeying the body's rhythms for digesting food and metabolizing insulin. And that withers the spontaneity of childhood.
A child used to sleeping when tired or springing when wound up now learns all activity must be planned for with meals and shots. A child used to picking over dinner or packing it in at breakfast, now must count the carbohydrates and plan the insulin beforehand.
And a family used to catching meals on the fly has to get organized: Most diabetics try to eat roughly the same number of calories each day, at roughly the same time each day.
The devil is in all the details. What happens when your child is an obstinate 2-year-old and locks her hands behind her back to avoid a finger prick for a blood test? That's what happened to Dawn Miller just after her daughter Cassie, now 8, was diagnosed. What happens when a child wants to sleep at a friend's house, but the friends' parents can't handle the needle?
"I'm on their doorstep at 7 a.m." with a bottle of insulin, Miller said.
Parents spent Saturday morning learning about advances in diabetes. There are new kinds of insulin that act more quickly and give more freedom, said Dr. Irl Hirsch, medical director of the Diabetes Care Center at the University of Washington.
There are new ways of giving insulin, including pumps that can be programmed to deliver varying amounts 24 hours a day, as a healthy pancreas would. During the weekend, an implantable pump was approved for use in Europe, he said.
But parents spent the rest of Saturday brainstorming about problems they share now. One father wanted to know what to do with a child who insisted on testing her blood 30 times a day and seemed afraid to go to sleep for fear she'd have a midnight low. Several groups of parents shared tips on getting breakfast into teen-agers who want to sleep in.
Children, in the meantime, were playing. The little ones made faces while trying new vegetables; the older ones turned sticks and socks into puppets; and the oldest ones put on skits and flirted and told jokes.
Molly Pettit chased soap bubbles, her hair swinging as she slapped them down and stomped them. Her new insulin pump bulged in her waistband.
A few clicks on the pump's controls push extra insulin through a tube to the skin on her belly. She doesn't like being attached to the pager-sized pump, but it gives her better control and a new kind of freedom.
A few clicks, and she has enough insulin for a cupcake with frosting and sprinkles.
"It definitely helps maintain childhood," her mother said.
For more information, contact the American Diabetes Association by phone at 1-800-DIABETES or visit the association's Web site at www.diabetes.org.
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You can reach Catherine Trevison by phone at 503-294-5971 or by e-mail at ctrevison@news.oregonian.com.
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