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Pediatric Lung & Breathing Care
Helping Your Child Breathe Easier

Cystic Fibrosis in Children

Turn to University Children’s Health for compassionate, lifelong cystic fibrosis care. Your family has direct access to some of San Antonio’s top cystic fibrosis experts. Look forward to excellent treatment, support and education that help your child enjoy a healthier life and to help prepare them to be adults with cystic fibrosis who are able to manage their disease.

Fully Accredited by the Cystic Fibrosis Foundation

University Children’s Health holds full accreditation from the Cystic Fibrosis Foundation. Our adult and pediatric cystic fibrosis program also earned the 2024 Cystic Fibrosis Foundation’s Quality Improvement Award: Recognizing Outstanding QI Processes and Accomplishments. This speaks to our dedication to providing our patients the highest quality of compassionate care.

Your child’s doctors follow guidelines based on the latest research in:

Your Child's Cystic Fibrosis Care Team

Cystic fibrosis affects your family in many ways, so University Children’s Health takes a team approach to care. You and your child benefit from:

  • Pediatric pulmonologist – Makes a treatment plan that’s tailored to your child and based on the best medical evidence
  • Pediatric nurse practitioner – Helps oversee your child’s care 
  • Clinical pharmacist – Manages prescriptions and helps your child’s providers with complex medications and therapy
  • Nurse – Guides you through care and answers your questions
  • Dietitian – Works with you to help your child grow and maintain a healthy weight
  • Respiratory therapist – Performs lung function tests and teaches you how to use appropriate equipment to give your child lung medications and help to remove secretions from their lungs.  
  • Social worker – Helps your family navigate health insurance coverage, find financial assistance, get support for your child’s education and cope with the impact of cystic fibrosis
  • Pediatric endocrinologist – Treats diabetes, a condition that’s common in children with cystic fibrosis
  • Additional pediatric specialists – May include ear, nose and throat physicians, gastroenterologists and others as needed

Symptoms of Cystic Fibrosis

Many infants are diagnosed with cystic fibrosis because of an abnormal newborn screen. The only symptom they may have during infancy may be frequent, foul-smelling, greasy stools and/or difficulty gaining weight. Older children and adults may show symptoms such as:

  • Salty-tasting skin
  • Persistent coughing
  • Repeated ear, sinus or lung infections
  • Lung infections, wheezing or shortness of breath
  • Poor growth and weight gain
  • Greasy, bulky stools or difficulty moving bowels

Cystic Fibrosis Tests and Treatments

Infants with an abnormal newborn screen for cystic fibrosis as well as older children and adults can have sweat testing performed at University Hospital. It checks the salt level in your child’s sweat to help us diagnose cystic fibrosis. If the result is abnormal, we’ll work with the doctor who ordered the test to begin care.

  • Genetic testing will be recommended as needed to discover which cystic fibrosis causing mutations your child has. Knowing these mutations may affect what therapies can be used to treat your infant/child.
  • Lung function testing is performed to see how well your child’s lungs are working. Lung function tests are done during routine clinic visits and when you child is sick.
  • Based on recommendations from the Cystic Fibrosis Foundation, blood work is done to check your child’s liver function, blood sugars and vitamin levels. 

Your child will feel better and breathe easier with:

  • Medications and equipment that thin mucus and help to clear it from their lungs.
  • Special vitamins and pancreatic enzymes that help your child’s body absorb nutrients and gain a healthy amount of weight
  • Treatments to decrease lung bacteria and infections
  • Treatment with cystic fibrosis modulators-medications that help the defective cystic fibrosis protein to work better

We will work with your family and the child’s school to make sure that the appropriate accommodations are being made for your child.

Our team will work with your child as they get older to help them to develop the skills and knowledge that they need to manage their disease as an adult.

Long-Term Care and Support

Regular visits to University Children’s Health can help your child stay as well as possible. Frequent lung tests catch problems early when treatment works best.

We will review the treatment plan during each visit and adjust it if needed to provide the right care at the right time. We’ll get to know your family, so we can serve as your long-term partners and advocates in health.

Research

The Cystic Fibrosis Center at University Hospital is designated at a Therapeutic Development Center by the Cystic Fibrosis Foundation. This means that we conduct research to help improve the lives of patients with cystic fibrosis and work to find a cure for the disease. Patients are invited to participate in research studies they qualify for, but patients are not made to participate in research if they do not wish to.

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