Cystic Fibrosis Program

Coordinated, expert care

We know treating cystic fibrosis can be complex, which can mean that you must juggle many appointments for your child. Our team focuses on meeting all your needs under one roof, in a child-friendly environment. We coordinate that care to make the treatment process as smooth as possible.

In addition to pediatric pulmonology and gastroenterology specialists, our multidisciplinary care team also includes the following specialists, all specifically trained in treating children with CF:

• Dieticians

• Genetic counselors

• Infectious disease specialists

• Medical assistants

• Nurse educators

• Nurse practitioners

• Pediatric endocrinologists

• Pediatric nephrologists

• Pediatric otolaryngologists (ENT)

• Physical therapists

• Psychologists

• Social workers

• Surgeons

• Research coordinators

• Respiratory therapists

Child Life services are also instrumental to the work we do, especially when children with CF are hospitalized. Child Life helps us support children as they navigate:

• Medical and surgical procedures

• Frequent hospitalizations

• Peripherally inserted central catheter (PICC) lines, which we use to draw blood and give treatment

• Chronic health complications

• Learning to swallow pills

Safer lung function testing

Our leading approach to sanitary lung function testing helps spare your child from spreading or getting lung infections.

Lung infections are a hallmark of CF because thick mucus in the airways is a common symptom. This thickened mucus poses a risk for infection and can decrease lung function over time. This is why children with CF need their lung function tested regularly. To do that, they need to undergo a test called spirometry, which requires your child to blow into a piece of equipment.

Spirometry is usually done in a room called a pulmonary function lab. However, each time a child does a spirometry test, they are potentially exhaling bacteria into the lab. At Children’s Health, we bring the test to your child’s room, to limit each child’s exposure to bacteria.

We have also installed top-of-the-line air purification systems in our pulmonary function lab. We also limit the number of tests we do in the lab each day, allowing us enough time to sterilize the space between tests.

We can also offer a different test to measure lung function called a lung clearance index test. This may work better for young children. We are among a select few hospitals offering this type of test.

Supporting your child’s transition to adult care

Children with CF are living longer than ever. That means they need a seamless transition to adult care when they get too old to see pediatric doctors. Working closely with UT Southwestern, our team has a streamlined, supportive process for this transition.

Our customized “fact sheet” for each child helps their adult providers understand their history more accurately and efficiently. Our nurse educator also helps patients prepare for this transition by empowering them to make their first appointment and giving tours of the UT Southwestern medical facilities. Our specialists also meet with the adult team at UT Southwestern quarterly to discuss patients.

Nationally accredited expertise

At Children’s Health, we are leaders in research and in finding ways to improve care. We consistently work to develop new and effective treatment strategies, and to make tried-and-true methods even better.

Our various accreditations with national bodies help bring research advances to the clinic so they can help your child. All this work has helped us continuously improve patient outcomes – the rates of cystic fibrosis flare-ups among our patient population have fallen while our patients’ pulmonary function has risen.

Our key accreditations include:

• The Cystic Fibrosis Foundation (CFF). CFF was built by parents looking to collaborate with providers to help advance care options for children with CF. They conduct research to address aspects of CF that parents and families cite as the most important. Working with CFF means you can trust that the treatments we offer your child are anchored in the realities parents and their children face. That also means they are easier for children and their families to integrate into their daily life and are ultimately more effective.

• The American Thoracic Society (ATS). The ATS is a professional organization that offers care guidelines and patient education resources to our providers. Our work with this organization helps root CF care at Children’s Health in the most recent scientific advancements and share those with families to help you make informed care decisions for your child.

Cystic fibrosis (CF) is widely known for causing lung infections and breathing difficulties, but the disease can also lead to serious gastrointestinal issues. We are home to the only Cystic Fibrosis Foundation-accredited program that is co-directed by a pediatric pulmonologist and a pediatric gastroenterologist. This helps our team of experts at the Claude Prestidge Cystic Fibrosis Center focus on how CF affects the entire body. We offer all the services your child needs in one location.

Our program is also part of the Cystic Fibrosis Foundation’s Therapeutics Development Network. This partnership helps us contribute to and learn from cutting-edge research. That means we can offer care based on the latest research to infants, children and adolescents.

All our physicians are faculty members at UT Southwestern. This gives your child access to top experts and the most comprehensive care possible.