Rare Lung Disease Program

Depending on your child’s condition, care team members may include doctors from specialties such as pulmonology, ear, nose and throat, gastroenterology and radiology as well as dedicated specially trained nurses, social workers and pharmacists.

At your first appointment, our nurse coordinator will speak with you about concerns that you have with your child’s breathing. The nurse will ask about your child’s symptoms and any family history of breathing problems. You will then meet with one of our pulmonologists, who will review your child’s history and symptoms. The pulmonologist will also examine your child and may order diagnostic procedures. These may include bronchoscopy, pulmonary function testing and imaging tests such as X-ray and computed tomography (CT).

Nasal nitric oxide collection, which measures exhaled nitric oxide, and ciliary biopsy collection, which examines cilia specimens from the nasal passages, is also available. Both of these tests are used to diagnose primary ciliary dyskinesia.

After reviewing your child’s medical history and physical exam and diagnostic test results, the pulmonologist and care team will recommend a treatment plan that meets your child’s specific needs, which includes daily management and follow-up care with the pulmonologist. Expert care for your child is assured with access to the resources of Riley at IU Health.