Cystic Fibrosis Program – What to Expect

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The Norton Children’s Cystic Fibrosis Program offers cystic fibrosis (CF) care that treats the whole child and family. Once your child is diagnosed with CF, here is what to expect from our CF program.

Frequency of Visits to Norton Children’s Cystic Fibrosis Program

We recommend families visit four times a year, at which time pulmonary function testing and a sputum culture will be obtained and the child will see our multidisciplinary care team. We stress the importance of these visits in order to maintain lung function, optimize growth and nutrition, and keep the family informed about the latest treatments and research developments.

Working With Your Primary Care Physician

The child should continue to see their pediatrician or primary care provider (PCP) as recommended by the American Academy of Pediatrics for routine health and wellness visits. Minor illnesses generally are managed by the PCP. We will communicate with the child’s PCP on a regular basis.

Cystic Fibrosis Treatment Plan

Our care team will develop a comprehensive care plan customized for the child based on individual family needs, which will include airway clearance techniques and nutritional recommendations. We stress the importance of following the care plan to stay healthy.

Exercise

Exercise may be used as an addition to the airway clearance regimen. Our respiratory therapist will instruct you on proper cough techniques to maximize your child’s mucus clearance.

Nutrition

To optimize growth and nutrition, we recommend a healthy diet rich in calories, protein and fat. Some children may require additional nutritional supplementation or tube feeding for adequate growth.

Secondhand Smoke Risks

We recommend that adults not smoke around children in the home or in vehicles, especially any child with CF. Secondhand smoke exposure may lead to worsening respiratory symptoms and lung function abnormalities.

Transition to Adult Care

We begin to transition pediatric patients to an adult CF care provider at age 16 in coordination with UofL Physicians’ adult CF program. However, the transition is an ongoing process that involves all team members to ensure this important milestone is successful.

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