2006-10-19 / Family

A family's struggle to return to normal

Diabetes diagnosis a 'shock'
By Joann Groff joann@theacorn.com

Cooper Bowen Cooper Bowen Shortly after Cooper Bowen's first birthday, his parents noticed something wasn't right with their son. He was excessively thirsty, going through a gallon of milk each day. Cooper was frequently hungry, but losing weight. His gregarious personality changed dramatically and he became lethargic. After a couple of visits, the doctor decided to check the Calabasas boy's blood sugar level.

"It clicked in my head," said Cooper's mother, Darcy Bowen. "It made sense to me at that moment. Of course, that was it."

A normal blood check would have shown a 100 score. That day in the doctor's office, the testing device just read "high." It stops registering at 600.

In December, Patrick and Darcy Bowen learned that Cooper, just 16 months old, had Type 1 diabetes, a chronic disease in which the pancreas doesn't produce insulin, a hormone necessary to live. Children with Type 1 diabetes must take injections of insulin every day to stay alive.

"It's a shock being sent home from the doctor with a big box of needles," Darcy said.

"This is what you have to do," she said, "and if you don't do it, he could go into a coma, diabetic shock, hypoglycemia, hyperglycemia . . . That day our whole world turned upside down."

The Bowens check prick Cooper's finger to check his blood at least 12 times each day, including twice in the middle of the night. He receives an average of five insulin shots each day.

According to information from the Juvenile Diabetes Research Fund, consistency is the key--regular meals, regular exercise and regular insulin. It's a constant balancing act of exercise, sugar intake and monitoring.

But it's not just food and activity that affects blood sugar. When Cooper has nightmares, or gets scared, the level can rise, as it does when he gets too warm. Recently his molars have begun to appear, and the pain increases sugar levels as well. A monitor by the bed alerts the Bowens to signs of pain, excitement or discomfort.

"Even a little groan, we can't let that go," Darcy said. "That's just our life now."

Patrick agreed. "We have to err on the side of caution, because you think, 'Good God, what if I didn't?'" he said. "We were completely ignorant to what diabetes was. We knew it was out there, but we didn't know how one gets it or what you do. . . . I never knew how difficult it is."

Patrick said his family struggled to understand how this happened to Cooper. Neither his nor his wife's family has a history of diabetes. Research associates genes with diabetes risk, but 90 percent of children who develop Type 1 diabetes have no relatives with the disease.

"At most, only 15 percent of people with Type 1 diabetes have an affected first-degree relative-a sibling, parent, or offspring," said Dr. William Winter, a professor at the University of Florida College of Medicine in Gainesville. "Research suggests that genes account for less than half the risk of developing Type 1 diabetes. These findings suggest that there are other factors besides genes that influence the development of diabetes."

Type 1 diabetes is not caused by obesity or eating too much sugar, some common myths that the Bowens have battled.

"It frustrates us if people think we are just bad parents, letting him eat bonbons and cotton candy and sit around playing video games," Patrick said.

One of the most significant difficulties for families with babies or toddlers who develop Type 1 diabetes is the child's inability to communicate. Lately, though, Cooper has been trying.

"He's starting to put a finger out to get checked," Patrick said.

Darcy said recently when Cooper wasn't feeling well, he kept saying things like "orange circle" and "dripping." After she checked his blood and saw his sugar level was low, she got a tablet that helps correct it. Then she realized that the tablets are round, orange, sugary pills that cause Cooper's mouth to drip saliva when he takes them.

"He was trying to tell me," Darcy said. "That was the first time he's ever done that. I try really hard to tell him if he's high or low. We're getting there."

But the most difficult task, according to the parents, has been trying to return to normalcy.

"We have learned how to administer his insulin and to recognize the signs that his blood sugar is either too high or dangerously low," Patrick said. "What we have not found to this point is a babysitter who understands this condition and how to step in for us while we take in a dinner or a movie."

The Bowens have read about babysitting services for children with diabetes run by youth with diabetes, but said that so far the Conejo Valley seems to be void of such help. Since Cooper's diagnosis, Patrick and Darcy have not been out together.

"You try as a parent to find a babysitter you trust under normal circumstances, and all of the sudden you're trying to imagine putting a babysitter in that's never been exposed to this," Patrick said. "There's not a good network out here in the Conejo Valley. I would be thrilled if there were other families-we were introduced to one- around here going through these same problems. There's got to be high school kids out here who are diabetics, who know what to do."

By now, Cooper has endured more than 2,750 blood checks and 1,500 insulin shots--he celebrated his second birthday in August. Although the Bowens are becoming more comfortable with the process, they are committed to seeing the disorder cured in Cooper's lifetime.

Patrick joined the board of directors of the JDRF, an organization focused on finding a cure for Type 1 diabetes and its complications. This weekend, the JDRF is hosting the Los Angeles Walk to Cure Diabetes. More than 10,000 people will walk the 5K Sun., Oct. 22 at Dodger Stadium. The Bowens have set a $20,000 goal and are getting closer to reaching it every day.

According to study results released last week, 6,379 youths in the U.S. under 20 years old had Type 1 diabetes in 2001, less than 1 percent of approximately 3.5 million youth. That's 1.82 per 1,000 children, according to The SEARCH for Diabetes Youth Study.

Estimates for 200304, according to an Express Scripts study distributed by the American Diabetes Association, show that 3.2 children of every 1,000 have the disease.

For more information about Type 1 diabetes, visit the JDRF website at www.jdrf.org or the ADA site at www.diabetes.org.

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