The Herald, Sharon, PA Published Sunday, July 1, 2001

MERCER COUNTY

Diabetes can be grueling for children and families
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Disease limits kids' spontaneity, changes life for the entire family

By Erin Remai
Herald Staff Writer

If anyone knows about juvenile diabetes, it's Karen Kosnac.

Mrs. Kosnac, the manager of the Regional Diabetes Center at UPMC Horizon, has been on intimate terms with the disease since 1980 when her then 2-year-old daughter, Erin, was diagnosed.

"When you look at this as a diagnosis itself, it's such a mind-boggling experience," she said. "You don't ever grasp what you'll have to do, or how you'll have to do it."

Juvenile diabetes -- also known as Type I diabetes, insulin-dependent diabetes or diabetes mellitus -- causes a person's pancreas to produce little or no insulin. Insulin is a hormone that helps the sugar from food get into body cells. Without insulin, sugar stays in the bloodstream.

Type II diabetes often strikes people over 40. People with Type II diabetes need medication and a special diet but usually not insulin shots.

Juvenile diabetes brings with it inevitable complications, which may include kidney failure, blindness, nerve damage, amputation, heart attack and stroke.

The most common signs of juvenile diabetes include increased thirst and urination, weight loss, fatigue and a "sickening sweet smell," which is caused by the body breaking down fats, Mrs. Kosnac said.

"Lots of times, parents and doctors think it's the flu," she said.

It's simple to diagnose diabetes. All it takes is a finger prick. But the disease itself is far from simple.

"It's not going to go away. It's a lifetime diagnosis," Mrs. Kosnac said.

The diagnosis is particularly difficult on small children, who don't understand why the parent who usually cuddles and comforts them is sticking them with a needle several times a day.

"How do you reason with a one-year-old? Stabbing them 15 times a day ... it makes no sense to a little person," Mrs. Kosnac said.

It was an experience Mrs. Kosnac often went through with her daughter as she was growing up.

"When her blood sugar was low, she didn't want me to touch her. I was the person who did all the hurt," she said.

Jonelle Davis of Greenville had to face being the one with the needle when her son, Zachary, was diagnosed with juvenile diabetes a year ago when he was 13 months old.

"It just breaks your heart," she said, describing the hardship of waking him up at the same time every day with injections and having to eat at the same time every day. Zachary is now on an insulin pump, making life a little easier.

One thing Mrs. Kosnac wishes her daughter's childhood could have had is spontaneity.

"You lose the spontaneity of life," she said. "With a diabetic child everything has to be planned out."

She added she has found diabetic children to be more organized, but "It's not necessarily a blessing."

Jessica and Katie Lineberger of South Pymatuning Township, who are both active in dance, acrobatics and softball, also had to lose a little of their spontaneity. The sisters were diagnosed with juvenile diabetes nine months apart.

"It's affected our meal plan," said their mother, Melanie Lineberger. "We have to eat every meal on time."

Being diabetic also deprives children of the treats their peers get to enjoy.

"In the United States, we're geared toward fast food and food in general," Mrs. Kosnac said, adding she had to change the focus at Easter and Halloween from candy to jump ropes, bubbles and jacks.

Jessica and Katie get treats "here and there" and have crackers and cookies for snacks, but one candy bar can use up their allotted carbohydrates for the day.

Mrs. Davis always made sure her 5-year-old son, Mitchell, got snacks the same time Zachary did so he wouldn't feel left out. She also said it was hard to keep food away from Zachary while his brother was eating.

"The issue with siblings is a very important issue," Mrs. Kosnac said. "You're bound to spend more time with the difficult child because you have to. In young people's eyes they see you devote so much time and energy (to the sibling) sometimes they can be jealous."

Juvenile diabetes can also be an expensive disease.

Kids with juvenile diabetes need insulin, syringes and strips to test their blood sugar, in addition to fresh fruit and four to five day hospital stays, at least at the beginning. An insulin pump costs between $5,000 and $7,000, and some insurance doesn't cover it. The pump also needs to be replaced every four or five years.

"Chronic illness is very hard on a family," Mrs. Kosnac said. "You never think of your child being ill. It's just a given your child will be healthy."

Mrs. Kosnac said one thing the disease teaches is to never take good health for granted.

"I think it makes you take a good hard look at the world around you. You appreciate life so much more," she said.



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