Nemours’ Cystic Fibrosis (CF) teams teach children and their families about CF and how to manage the condition on a daily basis. Nemours’ 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 (CF) 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 children and their families, teaching them about Cystic Fibrosis treatment and how to manage the condition on a daily basis. We focus on meeting the needs of each of our patients from birth to age 18.
- newborn screening
- diagnostic testing, the gold standard of which is a sweat test performed in one of our state-of-the-art laboratories
- Cystic Fibrosis treatment for newly diagnosed infants and children
- long-term care plans
- assistance with transitioning our teenage patients to adult CF programs
For Appointments: (407) 650-7715
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
At the Nemours Children’s Clinic, Orlando, we offer comprehensive Cystic Fibrosis treatment in a family-oriented and convenient environment, with all care provided at one location. Our program is central Florida’s only nationally accredited Cystic Fibrosis (CF) Center.
Cystic Fibrosis Treatment
Because monitoring and maintaining good respiratory function is essential for all children with CF, several tests are standard parts of the routine care we provide:
- chest X-rays
- bacterial studies of sputum (mucus from the chest) to look for the growth of bacteria in the lungs
- pulmonary function tests (PFTs) to measure lung function
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. CF 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 for your child, as well as track his or her growth and weight gain over time.
Education is a key component in our goal to help children and families manage CF. We teach families 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. Social workers are available to help individual families with issues like funding care, insurance coverage, and transitioning teenagers 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 they’ve developed resources to help children cope with these feelings. They offer newsletters and support groups, and often pair children of similar ages so they can develop friendships among their peers. In addition, Nemours is developing an online chat service for CF patients.