Posts tagged with Children's Mercy Hospital & Clinics
Eudora — Eight-year-old Claire Arnold and her brother, Zach, 6, were chasing one another around a school playground area.
Zach stops for a couple of a minutes to explain the vest he and his sister need to wear once or twice a day for about 30 minutes.
“It shakes our disgusting things out,” he said. “The disgusting things are called Mr. Sticky.”
Zach and his sister both have cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system. It causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Dr. Philip Black, medical director of the Cystic Fibrosis Center at Children’s Mercy Hospital & Clinics in Kansas City, Mo., said about 1 in 3,000 babies are born with the disorder. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, the median lifespan is age 38 because of advances in research and medical treatments.
“The hope is that the development of new medications will make their lifespan normal,” Black said.
That hope is what Zach and Claire’s parents, Bobby and Amanda, hold on to each day. It’s also the reason they are participating in this Saturday’s Great Strides walk in Lawrence, which will not only raise awareness about cystic fibrosis but also provide money for research, care and education programs through the national Cystic Fibrosis Foundation.
“We are trying to keep them as healthy as possible so they don’t have to have the struggles,” Bobby Arnold said. “Our hope is the kids will get bigger and stronger and the treatments will too.”
Bobby Arnold said they had “no clue” about cystic fibrosis because there were no family members who had the disease. The Arnolds, of Eudora, have two children, Madison, 12, and Brant, 10, who do not have cystic fibrosis.
Black said millions of Americans carry the defective cystic fibrosis gene, but do not have symptoms. That’s because a person with cystic fibrosis must inherit two defective genes: one from each parent.
He said within the past five years all states have required a newborn screening for the disease, so it’s detected early and they can begin treatments. Before, it sometimes wasn’t detected for several years.
When Claire was born she weighed 7 pounds and continued to weigh that amount at age 3 months. Her concerned parents decided to seek a second opinion from a pediatrician who referred them to Children’s Mercy, where they got the diagnosis. She had several symptoms, including poor growth, frequent greasy stools and salty-tasting skin. Other symptoms include shortness of breath, frequent lung infections and persistent coughing.
When Zach was born, the couple opted to have a test done to see if he had cystic fibrosis. They faced a 25 percent chance.
Amanda believes it was in God’s plan for them both to have the disease. “They are inseparable,” she said. “They really look out for one another.”
Every day, they take medications, undergo treatments to clear their lungs, and do a lot of hand washing to avoid colds and other infections.
“When it’s cold or flu season, we’re very protective,” Bobby Arnold said. “The longer they have a cold, the more chances they have of getting it in their lungs and the more chances of them having lung damage.”
Black said there are various devices that patients can use to help get rid of the mucus. One is the vest, which compresses a patient’s chest between five and 25 times per second. He said it breaks the mucus loose so they can cough it out. The vest originally weighed about 75 pounds and now it’s about 20 pounds.
There’s also the Flutter or “pickle device,” which weighs a few ounces and is much more portable. Patients breathe into the device and it creates the same frequency of oscillation. Black said it’s generated by their breathing rather than a machine. Claire is old enough to use the pickle.
Every three months, they have appointments at Children’s Mercy where they undergo testing.
They also are on high-calorie diets with the goal of eating 3,000 calories per day, which makes their older siblings a little jealous. They get to indulge in chocolate milk and eat pancakes topped with bananas, whipped cream and syrup. They love bacon. The more they eat, the better.
“We try to have them eat more often because it can be hard for them to eat big meals,” Amanda Arnold said. “They like fruits and vegetables, which is good, but they don’t contain enough calories, so we’ve tried to add dips and Ranch dressing, and apples with peanut butter.”
So far, they’ve avoided feeding tubes and extended hospital stays for antibiotics or other treatments.
“For both of them, we are really blessed and lucky because they are doing really well,” Bobby Arnold said. “We made a choice from Day 1 that we were going to treat them differently but yet not hold them back and keep them in a bubble. It’s just not worth it. They have to have a life, too.”
Hanging upside down from a bar on the playground equipment, Claire says she would like to be a gymnast. She also talks about collecting stuffed animals, playing volleyball and playing with her friends.
Zach, who likes to play soccer, is busy running around with other children on the playground and going up and down the slide. Soon, he climbs to the top of the playground equipment and yells at the top of his lungs to his sister, “Maddie, Maddie, Are you it?”
JOIN THE FIGHT
The Heart of America Chapter of the Cystic Fibrosis Foundation is hosting its third annual Great Strides walk in Lawrence at 10 a.m. Saturday at Sunflower School, 2521 Inverness Drive.
The three-mile walk raises awareness about cystic fibrosis, a fatal genetic disease that affects 30,000 people, and money for research, care and education programs.
Last year's event drew about 200 participants and raised $55,467.
Registration begins at 9 a.m. and there's no minimum donation requirement to participate; however, if walkers raise $100, they get a T-shirt.
There will be refreshments and Kansas University cheerleaders and Big Jay will be at the event.
Weight can be a difficult subject for parents to talk about with their children, and too often, it’s put on the back burner.
A recent study by WebMD and Sanford Health shows 5 percent of parents struggle when talking to their child about drugs and alcohol, and 10 percent are uncomfortable talking about sex, but 25 percent are hesitant to discuss their child’s weight issues.
In fact, many parents of 8- to 17-year-olds admitted to avoiding the weight conversation altogether.
That’s a problem when 17 percent of children are obese — triple the rate from just a generation ago.
Amy Beck, a child psychologist in weight management at Children’s Mercy Hospitals and Clinics, said it’s not only parents who don’t want to talk about weight, but primary care doctors, too.
“Children are referred to our weight management program, and often it hasn’t been spoken about before. So, the parents will say, ‘I had no idea that this was a problem,’” Beck said.
She encourages parents to advocate for their children’s health and discuss any weight issues with their doctor. The sooner the better because it’s easier to prevent than treat. She has clients who are 2 years old and considered obese.
“It really can affect the majority of our body systems in some way,” Beck said.
“It may seem like, ‘He’s just a bit pudgy,’ but it can have a great impact. It just makes our bodies work harder,” she said.
Jennifer Church, a nutritionist at the Lawrence-Douglas County Health Department, also emphasizes early prevention. She said about 10 percent of the children ages 2 to 5 who are enrolled in the health department’s WIC program are overweight.
“We have seen that continuing upward,” she said.
If a child has gained weight, she said parents should not talk about diets and losing weight with their children because it can affect them psychologically. She also said a child should not be singled out or told that they are obese or overweight.
Instead, parents should talk about the importance of overall health and address it as a family.
“It’s critical for the whole family to participate. If a parent wants a child to eat healthy, they have to change, too,” Church said. “You can’t take soda away from them and then continue to carry around a big jug of it yourself.”
She said the same goes for exercise. Parents will say, “Go outside and play,” but that often doesn’t work or last long. She said it’s better to make it a family activity whether it’s kickball, rollerblading or a basketball shooting contest. If you are crunched for time, she suggests playing with them for a little while so they start having fun and don’t want to stop.
Also, turn off the computers and televisions and turn up the tunes. “No matter what you are doing, you will move more when music is playing,” Church said.
When it comes to food, Church said it’s hard for parents to tell a child they can’t have a second or third helping because that’s their job to keep them nourished. Her advice is to let the child guide their own hunger, but the key is to provide nutritious, nonprocessed foods and not chicken nuggets, corn dogs and french fries.
“Those are all foods that interfere with the normal response in the brain because they are packed with sodium and fats,” Church said. “If you have healthy food at mealtime, let them eat until they are satisfied. If you start saying, ‘No. You’ve had enough,’ it’s going to make them want more food and it’s going to backfire. It’s often a psychological thing.”
Beck, of Children’s Mercy, said food also can be misinterpreted as love.
“You are not harming the child by not letting them have the candy bar that they are screaming for in the grocery store,” she said. “I realize that can be hard for some people, but just remember that giving them whatever they want will be harmful down the road.”