Cystic fibrosis is a serious disease, but with proper daily care, children with the condition can live long, fulfilling lives.
Care at Children's
Cystic fibrosis (CF) is a condition that causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body. It’s one of the most common chronic lung diseases in children and young adults. CF is hereditary, which means it runs in families.
At Penn State Children’s Hospital, we have a full team of CF specialists ready to work with you and your child. We offer the latest treatments to help your child live a healthier life.
Our team includes:
- Pediatric pulmonologists (doctors who treat children with lung problems)
- Pediatric nurse practitioners (nurses who examine, treat and can prescribe medicine for children)
- Clinical and research nurses
- Respiratory therapists
- Social workers
A routine CF blood test screening was likely done within the first few days after your baby was born. These screenings have a high rate of false positives. So, if your baby’s screening comes back positive, a follow-up sweat test will be done. A sweat test is not painful or harmful in any way. A small amount of sweat is collected to measure how much salt (chloride) it has.
If the sweat test confirms that your child has CF, we will be with you every step of the way. Experts from many fields will be at your first appointment to help you understand the condition and your options for managing it. If your child needs care right away, we will start it then. Otherwise, we’ll encourage you to take a week or so to think about the things we’ve discussed and then come back for a follow-up appointment to create a care plan.
At Penn State Children’s Hospital, we follow the Cystic Fibrosis Foundation care recommendations. Because CF cannot be cured, our goal is to ease symptoms and slow the progression of the disease.
What you can expect
Your child’s treatment plan will depend on their age and symptoms. We will see your child often, but a lot of the treatment is done at home each day.
At each office visit, we will take a sputum (thick mucus) sample to look for bacteria growth in the lungs. We may also perform chest X-rays and pulmonary (lung) function tests as needed to help us see how treatments are working and how well your child is breathing.
Groups, Classes & Support
Support groups provide an opportunity to share your feelings and connect with other parents and caregivers who are experiencing similar struggles.
Learn more about pediatric support groups offered at Penn State Children’s Hospital.