Motivating Kids with Cystic Fibrosis to Gain Weight

Abigail Perez, 11, is one of the pediatric patients helped by the USF Cystic Fibrosis Clinic’s Nutrition Action Plan. She shares a light moment with clinic coordinator Allyson Casey, right.

Eating to Live: USF team is motivating kids with cystic fibrosis to gain weight

Abigail Perez can’t lose even one ounce. When the 11-year-old goes for her doctor’s appointment, she’s always told to eat more — more pizza, more cake, more red meat, more whole milk. For eating more, she gets little rewards … and the one big reward of staying alive.

For some it may sound like a dietary dream, but Abigail knows she needs to gain weight to help combat the effects of cystic fibrosis, a hereditary disease that injures the lungs, digestive tract, and other glands and organs. Abigail was diagnosed with the illness at birth, and has been a patient at the Cystic Fibrosis Clinic in the Pediatric Pulmonary Division at USF since she was two weeks old.

Cystic fibrosis (CF) affects the body’s ability to move water and salts in and out of cells, causing the lungs and pancreas to secrete a viscous mucus. This mucus obstructs different passageways in the body, preventing them from performing normally. When this happens in the pancreas, enzymes needed for digestion cannot get out of the organ and food passes through the stomach while nutrients are not absorbed. For CF patients, this means a lifetime battle against malnutrition, anemia, and loss of appetite.

Abigail undergoes a lung function test.

“With them, losing an ounce can be horrific,” says Sara McCready, an administrative specialist, and Abigail’s mom. “The weight thing is really huge, because they stop growing and then it affects everything.”

At nine years old, Abigail lost several pounds due to complications with her gall bladder, and McCready feared a major downward spiral. But then Abigail began the “CF Rewards System,” a specialized nutrition program developed at the clinic and administered by clinic coordinator Allyson Casey, ARNP, and nutritionist Nancy Newkirk. The results have been impressive, with Abigail gaining back her weight, and more.

“Our strategy is to engage the child and the parent in order to improve health,” says Casey.

The clinic is a Cystic Fibrosis Foundation (CFF)-accredited affiliate center for the care and treatment of children with CF from birth to age 21. As such, USF is recognized as offering the highest quality of specialized therapy and support for those with CF. Care is provided using a team approach to tackle the complex nature of the disease, and the group includes a pulmonologist, a pediatrician, an ARNP, a registered dietician, a social worker, a respiratory therapist and a medical assistant.

Patients who reach their weight-gain goals can choose among several rewards, including a favorite snack.

The rewards program begins with a team member explaining the process to the parents and child. A mutually agreed upon weight-gain goal is established, with the potential for a reward (candy, gift certificate, movie tickets, etc) if the goal is achieved in the interval leading up to the next visit.

To facilitate the system, a “Nutrition Action Plan” (NAP) tracks a comparison of the previous visit’s height, weight, body mass index and weight-gain goal, to the current measurements. Body mass index (BMI) is placed in one of 3 color-coded categories based on the colors of a traffic light with red being the lowest and green the best result. Within each category, recommendations on how to gain weight and improve health are offered.

In a pilot study of the plan conducted by Casey, more than 70 percent (15) of the 21 patients included demonstrated an improvement in their BMI with use of the NAP.

Abigail’s moms says she has thrived under the CF clinic’s rewards system.

“An atmosphere of fun and competition has developed in many families after starting the program, whereas in the past they may have been much more apathetic about seeing us,” says Casey. “The children now pay close attention to their weight when they come for follow-ups and are thrilled when they achieve their goal and win their reward.”

McCready says such has been the experience for Abigail as well, keeping her motivated by recognizing the positive strides she’s made. “She’s a child that thrives on a reward system,” notes McCready. “And she likes knowing that she’s doing everything possible on her own to keep from going backward with this illness.”

It’s an added benefit, says McCready, that the staff at the clinic is sincerely interested in Abigail not only as a patient but rather as a whole person as evidenced by their continued encouragement on a daily basis. Each member of the team has been quick to offer support and education whenever needed.

“They worry about her like she’s one of their own kids,” observes McCready, “and that is so important because you have a child here with an illness that is never going to get better, and you really need to have people there to pick you up and help support you.”

Nutritionist Nancy Newkirk reviews Abigail’s goals with her.

Newkirk, the nutritionist, says that support includes helping families set realistic, attainable goals so they are not discouraged by occasional setbacks. Parents, who prepare meals and manage their children’s routines, are key to helping maintain the child’s motivation and reinforcing positive behavior at home, she adds. “We work really hard to make the parent a member of our team. If Mom or Dad doesn’t buy into the plan, then the child isn’t going to gain weight.”

For instance, Abigail, like some other patients, did not like to eat breakfast. Because children with CF need to complete 20 to 45-minute breathing treatments as soon as they awake, families are hard-pressed to squeeze in breakfast and get to school and work on time. So, Newkirk encourages parents to provide foods like breakfast bars, muffins, nutritional supplement drinks, or even peanut butter and jelly sandwiches, that the child can take along in the car or bus and consume on the way to school. Or, she may encourage them to investigate qualifying for or purchasing school breakfasts for their children.

Another challenge is getting parents who are trying to lose weight to keep encouraging their kids to gain weight. “They complain that it’s not easy to keep preparing all these high-fat foods for the child with CF, while the rest of the family is trying maintain a healthy lifestyle by avoiding high-fat, high-calorie foods,” Newkirk says. So Newkirk offers easy-to-prepare single recipes that can be made ahead. She suggests strategies like giving whole milk to the child with CF while the rest of the family drinks skim, and adding butter to the child’s vegetables after cooking instead of cooking everyone’s vegetables with butter.

Casey, left, and Newkirk are key members of the USF Cystic Fibrosis Clinic’s interdisciplinary team, which also includes physicians, a social worker and respiratory therapist.

The USF CF team travels to locations in Tampa, Lakeland, Sarasota, Fort Myers and Naples to see patients. Each patient is seen at least three times a year, and some are seen every month. Visits include meetings with the nutritionist, social worker and a health care provider. Patients also undergo pulmonary function testing and respiratory cultures to monitor the organisms colonizing in the lungs. Blood work and X-rays are done yearly.

For more information about the program, or to make an appointment, call 813-259-8767.

- Story by Sheryl Kay
– Photos by Eric Younghans/USF Health Media Center