Additional InformationLearn more about what to expect at the clinic and understand diagnosis and treatment options.
The Pediatric CF Clinic is held weekly and the entire CF team is available to see each patient. We have a daily pulmonary clinic for emergency care and pulmonary nurses taking phone calls every day to answer your questions. The CF Foundation recommends that individuals with CF be seen in clinic at least four times a year. This not only ensures optimal care, but it also gives us the opportunity to really know our patients as individuals, tailor the care we provide to meet their unique needs and, ultimately, help them to live full lives.
Once each year, we’ll perform a comprehensive evaluation and exam. This includes lab tests, lung function tests and a chest x-ray. We’ll review these test results on the day of your child’s appointment. Following each visit, we’ll provide an updated care plan to you and your child’s primary care physician. We also encourage parents to coordinate their child’s vaccinations, routine medical care and non-CF related health issues with their primary care physician.
In accordance with State of Maine recommendations, all infants born in Maine are screened at birth for CF if the family agrees. Genetic counseling is available to parents of infants who screen positive for CF or who are carriers of the CF gene. We work closely with the state newborn screening laboratory to make sure we serve as a resource to these families during the difficult time of the initial CF diagnosis and we strive to see families within 24 hours of a CF diagnosis to answers the families questions and relieve their fears. Learn more about the CF screening process here.
If an abnormal screening is found, the sweat test is the standard test for diagnosing CF. The sweat test is a simple and painless procedure that measures the amount of salt in the sweat. A high salt level indicates CF. The CF Foundation recommends that the sweat test be performed at a CF Foundation-accredited care center such as ours which has strict guidelines to ensure accurate results. Genetic testing can also be used as necessary to diagnose CF.
Besides providing expert care for people with CF, we collect data from all our patients the national CF Foundation Patient Registry, which is a rich resource for parents, health care professionals and CF researchers to track the health of people living with CF in the U.S. Our data can be seen on the CF Foundation website.