Cystic Fibrosis

Nemours helps children recieve the expert Cystic Fibrosis treatment and care they need.

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.

 
Learn More About Cystic Fibrosis

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.

Nemours offers:
  • 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

Nemours Children's Hospital, Orlando


13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

Hours: Monday–Friday, 8:30 a.m. to 5 p.m.

 
What to Bring
  • 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
New Patients

Bring these forms for your first appointment:

Returning Patients
 
Forms & Resources
New Patient Forms
Returning Patient Forms
Resources for Patients & Families

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 Central Florida’s only nationally accredited Cystic Fibrosis Center, and one of only 110 accredited CF centers nationwide.

Our pediatric cystic fibrosis team includes:

  • pulmonologists
  • geneticists
  • cystic fibrosis clinical nurse specialists
  • registered dietitians
  • respiratory therapists
  • physical therapists
  • social workers

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.

Cystic Fibrosis Treatment for Kids in Orlando

 
Respiratory Care

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:

  • 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.

 
Nutritional Support

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 and Emotional Support

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.

 
Electronic Health Record: Keeping Track of Your Child’s Progress

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.

Learn More About MyNemours Online Health Record »


Coping and Support for Your Child and Family

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:

  • care coordination (schedule multiple appointments, tests, procedures and at-home care at convenient times and places)
  • communication (keep your primary care physician and community providers informed and in the loop)
  • collaboration (help build a support system and connect you with families that are on the same journey)
  • patient and family education (provide information about your child’s condition, treatments, clinical trials and recent research at our resource library in KidsTRACK)
  • support at the hospital and clinic (offer medical play therapy and procedure/surgery demonstration to ease fears)
  • consultation (provide educational planning services, resources and training for the school system and community agencies)
  • advocacy (offer a voice for your child and family to secure appropriate services at school and in the community)
  • seminars and training (demonstrate how to use medical equipment and cooking recipes in the first floor KidsTRACK kitchen)

Learn More About the Support Services Available at Nemours Children’s Hospital »


A Hospital Designed by Families, for Families

At Nemours Children’s Hospital, family-centered care is at the heart of everything we do. In fact, families helped shape the unique amenities and convenient services that make our hospital like no other in the region.

 
If Your Child Needs to Stay Overnight in Our Hospital

You’ll feel right at home in one of our private patient rooms designed with input from families who know what it’s like to have a child in the hospital.

Our large, comfortable, single-patient rooms have sleeping accommodations for two parents, a private bathroom, wireless internet access, connections for DVD players and game systems, and two flat-screen TVs.

Other in-room features include:
  • full floor-to-ceiling windows for natural light
  • refrigerator for family meals and snacks
  • wardrobe storage for personal items and a hotel-style safe
  • GetWellNetwork interactive television (uniquely based on your child’s age, medical condition and more) and allows your child to watch TV, surf the web, check e-mail, play music and games, and learn about your Nemours health care team.

Our “hospital within a garden” setting features many places for you and your family to go for fresh air and relaxation, including a one-acre interactive sensory discovery garden or one of our rooftop gardens on the second and fourth floors.

We have many more comforts and amenities such as:
  • complimentary valet and parking
  • kid-friendly commons areas for siblings
  • café and coffee shop
  • non-denominational chapel
  • concierge services

Learn More About Nemours Children’s Hospital »

 
Advanced Pediatric Medical Imaging Services Available Onsite

If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours
Children’s Hospital.

Our unique services include:
  • interventional radiology: Our team of experts uses image guidance to diagnose and treat diseases and tumors throughout the body. Certain conditions that previously required open surgery can now be treated by Nemours pediatric interventional radiologists. We are very fortunate to have the only dual-trained pediatric diagnostic and interventional radiologist in the state.
  • neuroradiological or cardiovascular imaging, and fetal MRI (magnetic resonance imaging): Our subspecialty-trained pediatric radiologists see children with complex conditions who require this highly specialized imaging.
  • Central Florida’s only 256-slice Brilliance iCT Scanner: We are one of only a handful of children’s hospitals in the country to have this latest generation CAT (or CT) scanner that scans faster than most machines and produces excellent images in a much shorter time with much less radiation exposure for the child.

Our team of board-certified pediatric radiologists and pediatric radiologic technologists are experts in the safe medical imaging of children of every age, even newborns.

We have also pledged our commitment to the “Image Gently” campaign of the Alliance for Radiation Safety in Pediatric Imaging, which is increasing awareness of the opportunities to promote radiation protection in the imaging of children.

Learn More About Medical Imaging at Nemours Children's Hospital »

 
Family-Centered Care Means We're Here for You

At Nemours, we want to hear your concerns and share with you everything we can about your child's condition and treatment. If English is not your first language, we'll make sure you understand what to expect — in your language.

Learn More About Interpreter Services at Nemours Children’s Hospital »

 
With Your Family From Clinic or Hospital to Home: KidsTRACK

If your child has a complex or chronic condition we encourage you to take advantage of KidsTRACK, a unique service of Nemours Children’s Hospital. Located on the 1st floor of our hospital, KidsTRACK is designed to help families by providing expert assistance and information on all aspects of your child’s care, even before you leave our hospital or clinic.

A KidsTRACK care coordinator is available during every step of diagnosis, treatment, and healing — helping your family make a smooth transition from Nemours Children's Hospital to home. Your coordinator works alongside the nursing/case managers in our subspecialty areas and acts as a single point of contact connecting you to medical and community resources.

Simply ask your physician for a referral to KidsTRACK
or call (407) 650-7715.

Learn More About KidsTRACK at Nemours Children's Hospital »