August 2, 2008
Kids & Diabetes When Diagnosis Comes Early in Life, Child Takes on Adult-Size Responsibility
By Stories by MADONNA YANCEY, Courier & Press correspondent
Childhood should be a time filled with fun and promise. Not a time of worry and constant medical concerns.
"It changes your lives completely," Dana Lobel said. "You lose a lot of spontaneity with this disease. Anything your child does can affect his blood sugar. Managing the disease is a lot of responsibility for a young boy."
When her son was diagnosed, Lobel was working as a counselor at Dexter Elementary School. She helped organize a walk at the school to educate Ben's classmates about his disease and to raise funds for research.
"That's how I got involved with the Juvenile Diabetes Research Foundation," she said. "There was not a chapter in the Evansville area at that time."
The local chapter of the foundation had its first fundraising walk at Holiday World & Splashin' Safari three years ago. So far, that annual event has raised more than $600,000 for diabetes research.
Lobel has also organized a support group for families dealing with type 1 diabetes.
"Diabetes is a life-changing disease, for both the diabetic and the family," she said. "The support groups allows kids to get to know other kids with the disease, so they realize they're not alone, and also allows parents to share ideas and just talk about what their family is going through."
Cheryl Chodkiewicz is part of Lobel's support group. Her 8-year- old daughter, Carly, was diagnosed with type 1 diabetes two years ago.
"I started noticing that she went to the restroom a lot," said Chodkiewicz. "My older sister is a type 1 diabetic, so I was aware of the signs. I had a gut feeling that something was wrong with Carly."
After her daughter's diagnosis, she was sent to Riley Hospital for Children in Indianapolis for several days.
"We had to learn to take care of her," said Chodkiewicz. "We had to learn how to check her blood sugar,
give her shots, count carbs, read nutrition labels.
"There was an adjustment period, but I was determined for our family to get back to normal as soon as we could."
Carly has taken on some of the responsibility for managing her disease, including giving herself twice-daily insulin injections, under her mother's supervision.
"I watch what I eat," she said. "I can't have really sugary things. I check my blood sugar. And I take my shots."
Carly is an active child with many interests.
"I like to play sports," she said. "I play soccer and softball and a little basketball. I like to do artwork and play with my dog, Scout."
"We want her to have as normal a life as possible," said Chodkiewicz. "We want her to be included. We want her to be strong, to do her best and to enjoy her life."
The statistics from the American Diabetes Association are sobering:
n 24 million Americans have diabetes.
n 54 million have a condition known as prediabetes and are at serious risk of developing the disease.
n One in three children born in 2000 will develop diabetes in their lifetime.
n The economic cost of diabetes in 2007 was estimated at $174 billion.
Of the 24 million Americans who have diabetes, between 5 percent and 10 percent have type 1 or insulin-dependent diabetes. The pancreas has stopped making insulin, and they can no longer regulate their blood sugar. In type 2 diabetes, the body does not produce enough insulin or is unable to utilize it properly.
Type 1 diabetes used to be called juvenile diabetes because it was most often diagnosed in childhood or adolescence. However, increasing numbers of people in their 20s and 30s are being diagnosed.
"We're unsure of the cause, although certain genetic backgrounds and exposure to certain viruses are part of the picture," said Dr. Linda DiMeglio, a pediatric endocrinologist at Indiana University School of Medicine.
Our germ phobia may be part of the problem. "As we have become more highly hygienic, we've seen a concurrent increase in type 1 diabetes," said DiMeglio. "We've also seen an increase in multiple sclerosis, celiac disease and other autoimmune diseases. You need a certain amount of exposure to germs in order to be healthy."
Genetics may be another part of the puzzle. "If your mother had diabetes, your risk is 3 percent," said DiMeglio. "If your father had it, the risk increases to 7 percent. For a sibling, it's 4 percent. In identical twins, that risk jumps to 60 to 70 percent."
If type 1 diabetes is not properly treated, it can lead to heart and blood vessel disease; nerve, kidney and foot damage; skin conditions; and an increased risk for osteoporosis.
Several once-promising developments in the treatment of diabetes, such as oral insulin, have not panned out.
"We thought inhaled insulin might be a huge breakthrough," said DiMeglio. "But it turned out to be very expensive and cumbersome to use."
Ongoing research is looking into ways of preventing, or at least delaying, the onset of diabetes.
Continuous glucose monitoring devices have been developed, but they aren't widely available. They allow patients to know their blood sugar levels 24/7.
"If the blood sugar goes too low, it can cause everything from disruptions in thinking to seizures or even death," said DiMeglio.
"Dealing with diabetes is very expensive, even if you have insurance. You need to have cooperation from the schools and from caregivers to help manage your child's disease. It puts an incredible amount of stress on families."
Carly Chodkiewicz has advice for other children with diabetes.
"It isn't as scary as you think it's going to be," she said. "And you aren't as different as you think you are."
A number of symptoms
may indicate type 1
diabetes. They include:
Increased thirst, increased urination, increased hunger, weight loss despite increased appetite, drowsiness and/or fatigue, blurred vision, dry, itchy skin, slow healing of sores
and bruises, vaginal
yeast infections in
The foundation raises funds to support research toward a cure for type 1 diabetes. The Web site includes information on fundraising activities, a newsletter, an online support team and blogs by people living with diabetes.
Juvenile Diabetes Research Foundation also has a Web site for children, with tips for them and their parents, personal stories and a pen pal network.
The association's Web site includes information on prevention, research, disease management, nutrition, recipes and message boards.
Planet D is the American Diabetes Association's Web site for children with type 1 diabetes.
Dana Lobel has helped organize a support group for families dealing with diabetes.
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