Cystic Fibrosis in Children

Cystic fibrosis is a chronic inherited disease. In children who have cystic fibrosis, the body produces abnormally thick, sticky mucus that builds up in the lungs, pancreas and other organs. This build-up can lead to serious breathing, digestive and other health problems.

Research shows that children with cystic fibrosis fare better when they receive care from a multidisciplinary cystic fibrosis clinic or center, such as the Rush Cystic Fibrosis Center, which is accredited by the Cystic Fibrosis Foundation (CFF) to provide care for both children and adults.

Remarkable Care for Kids

  • Accredited center: The Rush Cystic Fibrosis Center, which is accredited by the Cystic Fibrosis Foundation (CFF), includes both pediatric and adult cystic fibrosis clinics and provides inpatient and outpatient care for patients of all ages.
  • Nationally recognized excellence: The Rush Cystic Fibrosis Center is one of three cystic fibrosis centers in the country to receive an award for outstanding partnership from the CFF.
  • Dedicated lab for pediatric patients: The pediatric pulmonary function laboratory at Rush offers specialized lung function testing for children from three to 18 years of age. It’s one of only a handful laboratories in Illinois dedicated to evaluating and testing children with lung disorders.

 

  • To develop cystic fibrosis, a person must inherit defective cystic fibrosis genes from both parents. If you have only one defective cystic fibrosis gene, you will not have the disease, but you may pass the gene to your children.

Symptoms of cystic fibrosis in children

Early diagnosis and referral to a cystic fibrosis clinic or center can help children with cystic fibrosis live with a better quality of life. Take your baby or child to the pediatrician if you notice any of these symptoms:

  • Belly pain caused by severe constipation
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Increased gas, bloating or a belly that looks swollen (distended)
  • Delayed growth
  • Excessive coughing
  • Frequent lung infections
  • Salty-tasting skin
  • Wheezing or shortness of breath

If your child has been diagnosed with cystic fibrosis, tell your child's care team if you notice new symptoms or if existing symptoms grow worse.

Care for cystic fibrosis at Rush

  • Disease management: There is no cure for cystic fibrosis, so your child's care team will focus on preventing and relieving symptoms, as well as slowing progression of the disease. Since cystic fibrosis affects each person differently, every treatment plan is unique. Your child's team at the Rush Cystic Fibrosis Center will tailor services and care around you child's and your family’s needs.
  • Sweat test: If your child has a positive newborn screening for cystic fibrosis, you can schedule a sweat test at Rush for your baby. Typically, you can schedule the test at Rush in less than two weeks after the positive newborn screen.
  • Genetic testing and counseling: Rush offers genetic testing and counseling for children.