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Pediatric Cystic Fibrosis (CF)

If your child is diagnosed as having cystic fibrosis (CF), partner with UNC Children’s expert team. You can count on specialized care, advanced treatments, and extensive support for the whole family. Our clinic is fully accredited by the Cystic Fibrosis Foundation and cares for more than 320 children from North Carolina and nearby states, keeping them as healthy and active as possible.

What is Cystic Fibrosis?

Cystic fibrosis is a genetic disease that causes the body to produce unusually thick, sticky mucus. The mucus clogs lungs and makes it difficult for the digestive tract to absorb important nutrients.

Diagnosing Cystic Fibrosis

Today, all newborns in the United States are screened for cystic fibrosis. (Newborn screen for CF first began in North Carolina in April 2009.) That’s because the earlier CF is detected and treatment is started, the healthier your child will be.

Complete Diagnostic Testing

If your child’s newborn screening shows a positive (abnormal) result, you’ll need further diagnostic tests to find out whether your baby has cystic fibrosis. For newborns with an abnormal result, the next step is to schedule a sweat test, an outpatient procedure which allows the precise amount of salt in a child’s sweat. At the time of your child’s appointment, you will receive additional information about the screening test, the sweat test, and cystic fibrosis.

Most of the infants tested due to an abnormal screening test do not have cystic fibrosis, but additional testing will be necessary in some cases. UNC Children’s pediatric cystic fibrosis specialists provide a complete array of diagnostic tests related to cystic fibrosis, including:

  • Chest X-ray – Shows thickening of bronchial passages, scarring or signs of trapped air or mucous plugging in the lungs
  • Genetic tests – Reveal the specific gene mutation that causes your child’s CF
  • Lung function tests – Show how much air your child can breathe in and out, how fast s/he can empty their lungs, how evenly their lungs fill with air, and how well the lungs deliver oxygen to the blood
    • Infant lung function testing
    • Preschool lung function testing
  • Sputum culture – Analyzes mucus cough up from the lung for bacteria
  • Sweat tests – Precisely measure the amount of salt in your child’s sweat

Symptoms of Cystic Fibrosis

Your physician may recommend diagnostic testing if your child shows symptoms of CF and was not screened as a newborn. (Again, newborn screening for CF in North Carolina began in April 2009.) Common symptoms include:

  • Very salty tasting skin
  • Persistent cough, sometimes with phlegm
  • Frequent lung infections
  • Wheezing or shortness of breath
  • Poor growth and slow weight gain
  • Frequent greasy, bulk stools or difficulty in bowel movements

Multidisciplinary Pediatric CF Clinic

When your child comes to UNC Children’s multidisciplinary CF clinic—located in the children’s outpatient center on the ground floor of N.C. Children’s Hospital—care team members will rotate through your room to provide evaluations, services, and education. We bring everyone together in one place to make your visits as convenient and helpful as possible.

Your child’s team, comprised of specialists with expertise in managing cystic fibrosis, will include:

  • Dietitians
  • Nurses
  • Board-certified pediatric pulmonologists
  • Physical therapists
  • Psychologists
  • Respiratory therapists
  • Social workers

The UNC Children’s CF Clinic offers appointments Tuesday through Friday from 8 a.m. to 4 p.m.

Effective Management of Cystic Fibrosis

Your child’s CF care team will work with your family to create a regular treatment routine to keep your child in the best possible health. The plan will consider all features of your child’s health related to CF and may include:

  • Quarterly clinic visits at a minimum
  • Airway clearance therapies – Loosen thick, sticky lung mucus so it can be cleared by coughing
  • Antibiotics – Treat infection caused by bacteria, fungi
  • Inhaled medications – Treat aspects of CF lung infection and mucous plugging
  • Nutrition/diet recommendations
  • Pancreatic enzymes – Assist with digestion

If your child develops cystic fibrosis-related diabetes (CFRD), you’ll find UNC Children’s pediatric endocrinologists and certified diabetes educators have expertise in caring for kids with this unique form of diabetes.

Leading the Search for New Treatments

Your child will benefit from being treated by physicians who contribute to clinical research trials and observational studies to find the best treatments for cystic fibrosis.

If you would like to learn more about our current research studies please contact Kelly Moormann (kelly.moormann@unc.edu) or Rose Cunnion (rcunnion@email.unc.edu) via email or by calling the Pediatric Pulmonology Division Main line at 919-966-1055.

Transition to Adult Care

Today, many people with cystic fibrosis live into their 30s, 40s, and beyond, leading active adult lives. Because UNC Medical Center’s adult cystic fibrosis clinic also is accredited by the Cystic Fibrosis Foundation, your child can count on seamless, high-quality, lifelong care in one location.

Find Family-Centered Care at UNC

At UNC Children’s and N.C. Children’s Hospital, you’ll find friendly, compassionate staff who are experts at working with children and families. We’ll do our best to ease your anxiety, help you understand your child’s medical condition so you can make informed choices about their care, and offer whatever additional support you need. You can help make your experience go as smoothly as possible by exploring our patients and visitors section to learn about:

Ask for a Referral

You’ll need a physician’s referral to see one of UNC Children’s pediatric pulmonary care specialists. If you’re not sure our services are right for your child, we invite you to contact a member of our care team at 919-966-1055.

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