Pediatric Cystic Fibrosis
Our nationally accredited cystic fibrosis care center is here for you and your child with cystic fibrosis. Our pediatric lung specialists and multidisciplinary team members have promising, proven methods and therapies to help slow the progression of this condition. Through diagnostic and therapeutic management, we’ll help you improve and maintain your child's health.
We offer several cystic fibrosis multispecialty clinics, including:
- Newborn cystic fibrosis screen clinic
- Infant cystic fibrosis clinic
- Pediatric cystic fibrosis clinic
- Cystic fibrosis transition clinic, to help teens become more independent as they approach high school graduation
Our adult pulmonary providers offer an adult cystic fibrosis clinic, so individuals can transition seamlessly and continue to receive lifelong specialized care.
A lot goes into living with cystic fibrosis, sometimes called the salty life, since the condition causes people to have extra salty skin. Hear all about it from our patients and cystic fibrosis care center staff.
Children with cystic fibrosis at times require a “tune up” for pulmonary exacerbations and are admitted to the hospital for intravenous antibiotics. Cystic fibrosis inpatient care involves a multidisciplinary team, including our pediatric pulmonologists, nursing, respiratory therapy, dietitians, social work, child life, physical therapy and other medical specialties as needed. The child and family are considered an important part of the care team and are involved in medical decision making. Parents are welcome to stay at the bedside or onsite at the Renucci Hospitality House.
In accordance with infection control and prevention guidelines, and for the safety of the patient, contact precautions are in place while in the hospital. What this means for patients in the hospital:
- All staff entering a patient room must wear an isolation gown and gloves, similar to our outpatient cystic fibrosis clinic.
- Healthy visitors are welcome to visit during contact precautions and do not need to wear isolation gowns.
- Patients may not leave their hospital room unless escorted or approved by a hospital staff member. There will be scheduled times out of the room with visits to the playrooms, music room and other fun places. Patients may not go to the cafeteria, lobby, gift shops or other common areas to protect themselves and other cystic fibrosis patients that may visit those areas.
- Child life is able provide crafts and activities to help make the stay more fun, and families are encouraged to bring favorites from home as well.
- Prior to leaving their room, cystic fibrosis patients must put on a clean gown, wash their hands and wear a mask. This is for their protection as there are often multiple cystic fibrosis patients in the hospital at the same time.
- To make an inpatient stay more comfortable, patients and their families may want to bring bedding, pillows or even decorations from home. Gaming systems are also welcome, as well as laptops to work on homework during the hospital stay. There is a refrigerator in the room for favorite foods or snacks from home, if desired.
Your Child's Care Begins Here
Our pediatric pulmonary doctors are experts in cystic fibrosis, and our multidisciplinary consultative clinic is accredited by, and a member of, the national Cystic Fibrosis Foundation. This links our center with the latest knowledge and most current treatments for cystic fibrosis. Our multidisciplinary team of expert physicians, advanced practice providers, nurses, dietitians, respiratory therapists, medical social workers, psychologists, genetic counselors and child life specialists work together every week to review cases, revise care plans and educate our families on the best way to care for themselves.
Until a cure arrives, we explore every treatment option to determine the best plan for your child’s health. As a Therapeutic Development Network Center designated by the Cystic Fibrosis Foundation to do specialty research, we bring state-of-the-art research and new therapies right to our local cystic fibrosis community.
We a proud to have a family advisory council, consisting of several parents whose children receive care from our team. The council shares the patient and family perspective, informing clinic decisions and guiding our team's quality improvement work, with the goal of providing the highest quality care to all patients and families.
Treatments We Provide
Antibiotics may be prescribed to kill bacteria and infection in the lungs.
Inhalers and nebulizers help deliver medication to the lungs to make breathing easier.
A dietitian may be needed to address common cystic fibrosis dietary challenges like burning too many calories or not absorbing enough protein and fat from their diet.
Respiratory therapy includes breathing exercises to get rid of extra mucus, and breathing treatments to deliver medicine and add moisture to the lungs.
A vest connected to a generator causes rapid vibrations that stimulate your child to cough up mucus in the airways of the lungs. Vests work best with kids over the age of four.