The Cystic Fibrosis Center provides the following services:
- Official New York State Newborn Screening Program follow-up site. In the state of New York, a mandatory blood test is performed on all newborns as an initial screening for cystic fibrosis. If a baby's results are positive, the child is referred to our Center for more comprehensive diagnostic testing, including sweat testing and genetic counseling.
- Comprehensive evaluation of each child. When a child is referred to our Center, he/she receives a complete evaluation of his/her medical needs. A complete history, physical exam, and appropriate diagnostic studies are performed to determine if CF is present. If so, the patient will be followed on a regular basis to monitor their growth, any problems, response to treatment or any other needs. Follow-up visits are typically scheduled every three months. Your child's visit may also include:
- Meeting with the Nutritionist and/or Social Worker
- Laboratory testing, including sputum culture or throat swabs to identify bacteria
- Annual blood work and chest x-rays
- Pulmonary function testing
- On-going communication with primary care physicians. Reports on clinical evaluations and recommendations for treatment are provided to your primary care provider. These include results from our microbiology lab, which performs an extensive evaluation of cultures to identify organisms found in CF patients.
- Other support services. Support services are in place to assist patients and families in identifying resources available. We also provide education about the disorder, and train patients and their families in self-care.
Who Should I Call When my Child is Sick?
It is often confusing to figure out when to call your child’s primary care office or the CF Center for questions / concerns related to your child’s health that occur between visits. The following is a quick guide to assist with this process. Please note that we always encourage you to call one of the nurses at 585-275-2464 for any situation that is unclear and we will help guide you to make sure your child receives the best care possible.
- “Call” means you may be able to get the information or help you need over the telephone.
- “Visit” means you should call and make an appointment to bring your child in to see either your CF Center health care team or your child’s primary care provider (usually a pediatrician, family doctor, pediatric nurse practitioner, or physician assistant)
- Please note that often times, a “Call” results in a “Visit” after speaking with a member of the team.
View our chart that details who you should call.