Primary Ciliary Dyskinesia (PCD) in Children
Call today to schedule an appointment with one of our pediatric specialists.
Pulmonology Referrals
View the referral guidelines
Primary ciliary dyskinesia (PCD) is a rare inherited condition that causes the cilia in the airways not to work properly. Cilia are hair-like structures that create a wave-like motion to help move particles out of our bodies.
Specifically in our airways (nose, ears, lungs), cilia help keep bacteria, dust and other small items from entering, while also clearing out the mucus produced by our glands. When the cilia don’t move correctly, it allows things to enter our airways and causes mucus build-up that leads to infections in the ears, sinuses and lungs. PCD is a non-curable condition that requires lifelong treatment.
The only PCD center in Southern California
As the only accredited PCD center in Southern California, our team of primary ciliary dyskinesia experts is committed to improving the quality of life for the children we serve. As part of the PCD Foundation Clinical and Research Centers Network, CHOC joins a community leading PCD research, giving our families access to leading diagnostic and treatment options for primary ciliary dyskinesia.
At CHOC, your child will be evaluated by a team of multidisciplinary pediatric experts in PCD including a pulmonologist, otolaryngologist and geneticist. During your visit they will review your child’s medical history, perform a physical exam and conduct diagnostic tests to benchmark your child’s lung function.
Following your visit, we will provide an initial diagnosis. A confirmed diagnosis will be determined once all test results are available. After that, our team will begin developing your child’s treatment plan specific to their individual needs.
While every child at CHOC receives an individualized treatment plan, most families can expect the following schedule for ongoing visits:
- Quarterly pulmonary clinic visits (4x a year)
- Annual or Bi-Annual visits with the full treatment team (1-2x a year)
- Annual visits with an otolaryngologist, or ear, nose and throat (ENT) specialist
Innovative PCD treatment at CHOC
As an approved PCD Center within the PCD Foundation Clinical and Research Centers Network, CHOC patients have access to cutting-edge PCD treatments through clinical trials and the PCD National Registry. These clinical studies work to assess effective treatment and care for the condition.
Ongoing PCD management
Currently, there is no cure for PCD, so management of symptoms will be lifelong for your child. Beyond the treatments referenced above, it’s important for PCD patients to take care of their overall wellness. This includes exercising, having a healthy diet and avoiding things that make the condition worse, like smoking. Ongoing PCD management includes regular follow-up appointments, checking for infections and practicing airway clearance. Through our partnership with UCI Health, CHOC offers a unique opportunity for continuity of care of children with PCD into adulthood.
As experts in primary ciliary dyskinesia, we understand that the condition is different for every child and affects more than just their breathing. That’s why the CHOC PCD Center brings together a team of multidisciplinary pediatric experts in PCD to create individualized holistic treatment plans for every child.
Other pediatric doctors your family might meet include:
Registry Coordinator: They’ll schedule your child’s appointments and call you before your clinic visit to see if you have any questions for the PCD team.
- Pulmonologist: Their primary focus is on taking care of your child’s breathing.
- Nurse Practitioner: They will check your child’s lungs to make sure they continue to stay healthy.
- Respiratory Therapist: They help your child breathe comfortably using medication, equipment, therapies and/or training and education – specifically in airway clearance.
- Physical Therapist: They’ll work with your child to strengthen their muscles, correct posture, improve breathing mechanics, challenge their balance, and ensure they continue to meet their gross motor milestones. All to maximize their lung function.
- Dietitian: As a certified expert in diet and nutrition, they’re here to help watch your child’s nutrition and growth They partner with families to achieve individualized nutrition goals that ensure children have the calories and nutrients needed to fight any lung infections and support lung function.
- Social Worker: They support and educate families as you navigate the healthcare system. Additionally, they can help balance social, family, academic and health needs. You’ll work together to set and achieve goals as well as celebrate successes.
- Care Coordinator: They’ll ensure your family has everything needed to care for your child’s PCD (medication and properly working equipment). Anytime you have questions, and don’t know where to start, you can contact them. They’ll connect you with the team member you need.
- Research Coordinator: Specialized in studying the effectiveness of medication, they’re here to talk with your family about clinical studies.