Cystic Fibrosis Testing
Parents talk about the sweat test, a newborn screening for cystic fibrosis. Watch Video »
Nemours’ cystic fbrosis (CF) teams teach children and their families about CF and how to manage the condition on a daily basis. Our CF programs are nationally accredited as CF Care Centers by the Cystic Fibrosis Foundation. Membership in this network helps us to ensure that children living with cystic fibrosis get the expert treatment they need to live longer, healthier lives.
Cystic fibrosis is an inherited disease that affects the lungs and digestive system. It makes kids who have it more vulnerable to repeated lung infections. This is because it causes the lungs to produce thick, sticky mucus that clogs the airways. The intestines are also affected in a way that interferes with the body’s ability to digest and absorb food.
Our team of health care providers works together to support your child and family, educating you about cystic fibrosis treatment and how to manage the condition on a daily basis. We focus on meeting the needs of our patients from birth to age 18.
For Appointments: (407) 650-7715
Hours: Monday–Friday, 8:30 a.m. to 5 p.m.
Bring these forms for your first appointment:
Nemours Children’s Hospital in Orlando offers comprehensive cystic fibrosis (CF) treatment in a family-oriented and convenient environment, with all care provided at one location. Our program is a nationally accredited Cystic Fibrosis Center, and one of only 120 accredited CF centers nationwide.
Our pediatric cystic fibrosis team includes:
In addition, we participate in CF Transparency, a CF Foundation-sponsored initiative that encourages CF centers across the country to openly share outcome data with CF families. These insights also help us identify areas for improvement so we can deliver on our promise of excellence in CF care.
Since symptoms can vary greatly, a sweat test is used to diagnose cystic fibrosis (CF) as early as possible. Early symptoms are often similar to those of other childhood health problems. As a result, CF may go undiagnosed — or misdiagnosed — for years.
Because monitoring and maintaining good respiratory function is essential for all children with cystic fibrosis, several tests are standard parts of the routine care we provide, including:
Lung function is one of the primary ways we track the overall health of our CF patients. Our caregivers follow all the national guidelines for care, and because of our participation in quality improvement efforts, we have seen a consistent upward climb in our patients’ overall lung function.
We also provide routine pulmonary therapy (treatments to maintain lung function). Our respiratory therapists are skilled in airway clearance techniques and can educate children and families on the most effective ways to maintain clear airways.
Another part of our routine care includes blood tests to evaluate your child’s nutritional status. Cystic fibrosis puts children at risk for slow growth, difficulty gaining weight and a decreased ability to fight infection. They are also likely to have a condition called pancreatic insufficiency, which means that the digestive enzymes created in the pancreas aren't properly passed into the intestines.
By providing good overall nutrition, along with extra fat and calories and prescribed vitamin and enzyme supplements, you can help your child with CF grow healthy and strong. A CF-registered dietitian can design a medical nutrition therapy plan and track your child’s growth and weight gain over time.
Education is a key component in our goal to help your child and family manage cystic fibrosis. We teach you what to do in emergencies, provide education and the latest information about the disease, and host support groups with speakers and topics ranging from insurance issues to community and school resources. If needed, social workers are available to help your family with issues like funding care, insurance coverage and transitioning your teen into adult CF programs.
We also take into account the emotional toll of living with CF. Children with CF often have periods where they cannot interact with other children because of the risk of developing infections. Nemours CF experts understand how lonely this can be, so we’ve developed resources to help children cope with these feelings. We offer newsletters and support groups, and often pair children of similar ages so they can develop friendships among their peers.
No matter where your child receives care at Nemours, your medical team (including your primary care provider) can access your child’s medical history, test results and visit notes anytime through our award-winning electronic health record system.
You can also view parts of your child's health records, communicate with your Nemours care team, make appointments, request prescription refills and more through our MyNemours online patient portal.
Nemours Children’s Hospital offers an array of support services for your child and family. Our nurse navigators, educators, social workers and Child Life specialists provide: