Accredited Cystic Fibrosis Center
Children's Hospital of San Antonio is accredited by the North American Cystic Fibrosis Foundation. Our multidisciplinary team of physicians, nurses, respiratory therapists, dieticians, and social workers is dedicated to providing state-of-the-art care to children and adults with cystic fibrosis (CF).
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What is Cystic Fibrosis?
How is Cystic Fibrosis Diagnosed?
We have a screening test called the newborn screen, which can test babies’ blood for a substance called trypsinogen. If this test is abnormal, then the baby might have cystic fibrosis. Some states also screen for common genes for cystic fibrosis. These are just screening tests, so more testing is needed to confirm the diagnosis. If the screening test is positive a sweat test is done to confirm the diagnosis of cystic fibrosis.
How Is Cystic Fibrosis Treated?
We understand each patient is unique, that is why we provide customized medication regimens. Chest percussive therapy and medicines are common ways to manage the symptoms of cystic fibrosis.
For instance, for the lungs, inhaled medicines like bronchodilators (albuterol) can help open up the airways. Antibiotics can control and treat infections. There are also medicines that can break up mucus.
If the pancreas is involved, enzyme capsules can help with digestion. High-calorie drinks and diets can help with keeping a healthy weight, as well. Vitamins, mineral supplements, and exercise are recommended for good bone health.
New medications that actually treat the gene defect are becoming increasingly available. In addition, we recommend keeping track of all medicines with applications on your phone or tablet.
Pediatric Inpatient & Outpatient
When necessary, pediatric patients are treated on an inpatient basis, where staff nurses, dieticians, respiratory therapists and child life specialists are trained to care for the medical, psychological, and social aspects of CF.
Consultation from endocrinologists, gastroenterologists, ear nose and throat specialists, and surgeons experienced in the care of patients with CF is available on both an inpatient and outpatient basis. We strictly enforce Cystic Fibrosis Foundation-recommended infection control practices both in the clinic and in the hospital.
We follow the guidelines set by the Cystic Fibrosis Foundation for care including the recommendation that all patients attend quarterly clinic visits quarterly where nutritional and pulmonary status can be evaluated and therapies can be changed to maximize the child's nutrition and lungs.
State-of-the-art therapies and research studies are also discussed at these visits. In addition, our social worker is available to help with insurance and school/work-related issues to help each child and family cope with the many challenges, both financial and social, that come with a chronic disease like CF.
We are one of two cystic fibrosis (CF) centers in South Texas accredited by the North American Cystic Fibrosis Center. To gain this distinction, Children's Hospital of San Antonio's Cystic Fibrosis Center adheres to evidence-based protocols and best practices.
Our Center exceeds national average measures for median Body Mass Index (BMI) percentile (a measure of nutritional status) for CF patients two to 20 years of age, and mean FEV1 (a measure of lung function) for children six to 17 years and for adults older than 18 years of age. These results were achieved by closely following the guidelines set by the Cystic Fibrosis Foundation for care including the recommendation that all patients attend clinic visits quarterly (every three months) where nutritional and pulmonary status can be evaluated and therapies can be changed to maximize the child's nutrition and lungs.
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Stay Informed About Cystic Fibrosis
The Cystic Fibrosis Foundation (CFF) is one of the most efficient non-profit organizations of its kind with 90 percent of every dollar of revenue raised being available to fund cystic fibrosis research, care and education programs. Charity Navigator, the country's largest independent evaluator of charities, has given the CFF its coveted four-star rating for sound fiscal management.