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Little Kids, One Very Grown-Up Problem

Posted on: Monday, 1 August 2005, 12:00 CDT

Six-year-old Abby Payson leaves a pile of Barbies on the living room floor and runs outside to play. She swings, she rides her bike. She runs.

A half-hour later, she's back in the house asking for a snack. Her mother says she can have a small bag of Smartfood popcorn.

Then Abby goes to work.

She pricks herself with a pin to check her blood sugar. She reads the popcorn packaging to find the carbohydrate count. Then she punches buttons on her cell-phone-sized, $6,500 insulin pump, which is attached to her at all times.

The pump supplies Abby with enough insulin so that it is now safe for her to eat the popcorn.

"She's only been on the pump for about a month. She's doing so well with it, sometimes I forget she's 6," said Abby's mom, Tricia Payson. "But since getting on the pump, we've gotten our daughter back."

One year ago, Abby had virtually no energy, was drinking two gallons of water a day, had grown dangerously thin, and was close to going into a coma.

She had developed type 1 diabetes, known as juvenile diabetes, and life for her and her family would never be the same again.

Though diabetes is one of those diseases people think they know about, the misconceptions about its causes and seriousness remain. This is especially true about juvenile diabetes, which is not caused by diet or obesity. Often, a child diagnosed with type 1 diabetes comes from a family with no history of the disease. Abby's family, for instance, had no history of diabetes.

It's difficult to control, with patients needing constant monitoring and insulin. Even with care and monitoring, diabetes can make a person more susceptible to heart disease, stroke, kidney failure, nerve damage and blindness.

"A lot of people hear that a child has type 1 diabetes and think that it's something that can be controlled with diet and exercise, that these kids ate too much junk food and sat on the couch," said Colleen Marshall, special events coordinator for the Juvenile Diabetes Research Foundation's Maine branch. "That's not the case."

PATIENTS MUST BE WATCHED

Type 1 also affects the whole family, as patients have to be watched closely. If blood sugar gets too high or low, a child can become confused and disoriented.

And since many children measure their own blood sugar and control their own pumps, or have to have regular injections, they can't afford to become disoriented.

Also, to a 5- or 6-year-old child, having a shot six times a day, or a pump permanently attached to your body, can be frightening.

"During the first few months, when we had to give him the shot, he'd run and hide," said Brett Wickard, founder of he Bull Moose Music store chain, talking about his 5-year-old son, Stuart. "But the doctors told us to remember that every time we gave him a shot, we were saving his life."

Type 1 diabetes is the condition where the body's immune system attacks and destroys insulin-producing cells in the pancreas. Our bodies get most of their energy from the sugar in carbohydrates, and insulin is the hormone that allows the body to make that sugar into energy.

DETECTING THE SYMPTOMS

Without insulin, sugar builds up in the blood and can damage internal organs and blood vessels, said Dr. Jeffrey Maher, the Paysons' family doctor. People with type 1 diabetes have to know how many carbohydrates they are taking in - and sugar is just one form of carbohydrate - so they know how much insulin their body needs at any given time.

Maher said that when he diagnosed Abby Payson last summer, she was in a state called ketoacidosis. Because her body couldn't use sugar for energy, it had used her muscle mass and fat storage for energy. In the space of three to four months, her weight had dropped from more than 43 pounds to 37 pounds.

"Little kids shouldn't be losing weight like that," said Maher. "If she had been in that state much longer, she could have gone into a coma."

Abby was immediately hospitalized and stabilized. Then her family - parents Tricia and Jeff, and older brother Alex - began the process of learning how to live with type 1 diabetes.

During the past year the Paysons have spent a lot of time wondering if they and others could have done better at detecting Abby's symptoms.

Tricia had just started work as a mental health therapist, after being a stay-at-home mother and part-time student, when Abby started to seem ill. Tricia had even interned at a facility where diabetics are treated.

Jeff works full time managing an equipment rental store and he took Abby to the emergency room when she was at her worst. Both Jeff and Tricia have spent time wondering why an emergency room visit didn't turn up the diabetes, when a visit to Abby's regular doctor the next day did.

"There's guilt involved, people wondering if they did enough - that's common," said Liz Libbey of Auburn, who started a type 1 diabetes support group called For The Kids (www.forthekidsgroup.com) shortly after her daughter, Rachel, was diagnosed.

FUND-RAISING EFFORTS

The group Libbey started about three years ago now has 100 families, and most are incredibly involved in the day-to-day management of the disease. They have to be.

And that involvement spurs most families, including the Paysons, to be active in fund-raising and research efforts as well.

The whole family attends JDRF fund-raising events, and they collect spare change and recyclables whenever possible.

Abby, Jeff and Alex all participate in lawn tractor weight- pulling events at local fairs. They all have their own souped-up lawn tractors (Abby's is purple and pink). And at events, they pass the coffee can to collect change for type 1 diabetes research.

Alex, who is 8, has told his sister that if no one finds a cure for the disease by the time he grows up, he will.

"I'm going to develop something that works like the pancreas that you can wear on your waist," Alex said.

But until Alex or someone else finds a cure, families like the Paysons will continue to live with and manage this incurable disease the best they can.

Staff Writer Ray Routhier can be contacted at 791-6454 or at:

rrouthier@pressherald.com

Source: Portland Press Herald

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