What to Expect at Your First Visit to the Rare Lung Diseases Clinic

Having a child with unknown or complicated breathing problems is difficult especially when it seems like no one knows how to help you. It is also hard if you know your child’s diagnosis, but it is rare. It can be difficult to find information on the disease, and your family or local physician may not have answers to all your questions.

We are here to partner with you to find a diagnosis if possible and/or find the best treatment to manage your child’s symptoms. Our care team will share their expertise on rare diseases and help support your family in your difficult healthcare journey. We look forward to partnering with you and your family to answer your questions, concerns and to make you feel comfortable.

Making an Appointment for the Rare Lung Diseases Clinic

We want to make it easy for you to get the care your child needs. You can contact us yourself to schedule an appointment. Or, your local provider/hospital team can make a referral.

While traveling from a long distance to see us can be stressful, we will do our best to coordinate appointments if you’re seeing more than one specialist to make your trip easier.

Preparing for Your First Appointment

If this is a self-referral, a nurse will contact you before your appointment to prepare for the upcoming visit. This call will include:

• Gather information about symptoms, health history and past treatments

• Collect past test results, radiology imaging, pathology slides, and medical records (we’ll provide instructions on how to share this information with us)

• Determine if other appointments/referrals to other departments are needed (i.e. Rheumatology, Immunology, Cardiology, etc)

• Assess if testing is needed prior to appointment (i.e. Pulmonary Function Tests, Chest CT or Chest X-ray, Echo, etc)

If this is a provider or outside hospital referral, a phone call may not be needed if enough medical history has been provided in the original referral.

Please contact your insurance company to verify your benefits and referral requirements (especially if you live outside of Ohio). Specifically, you should ask about coverage for outpatient visits, testing, radiology imaging, and review of pathology. Or, in the rare instance, an OR procedure is needed.

If you find that your insurance does not cover this care, or your child does not have insurance, we may be able to help. Contact Financial Services to discuss your concerns.

On the Day of Your Appointment

Arriving at Your Appointment

Appointments for the Rare Lung Diseases Clinic are offered at Cincinnati Children's Burnet campus only. Please make sure you know in which building your appointment will be held. Also plan extra time for traffic and to find parking.

We recommend arriving at least 15 minutes before your scheduled appointment time to allow for registration.

If you are running late, please contact us.

At the Appointment

Your child will be undergoing a comprehensive evaluation so we can make an accurate diagnosis or take appropriate steps to finding a diagnosis. We will evaluate your child through a thorough medical history, physical examination, pulse oximetry check, possible blood tests, possible lung function testing and/or radiology imaging.

Typically, your child will be seen by an attending physician, nurse practitioner and registered nurse. In addition, your child may also see a registered dietician, respiratory therapist, or social worker if indicated. If your child is also scheduled to see other medical specialties, you would meet their teams as well.

Depending upon the availability of the specialists who need to evaluate your child, your visit may last one day or several days.

After Your First Visit at the Rare Lung Diseases Clinic

At the end of your visit, our team will develop an extensive treatment plan, which could include as much or as little as: simple monitoring over time, medication, airway clearance, surgical procedures, radiology imaging, interventional radiology, sleep study, and follow-up visit planning.

If you or your child are interested in research, you may meet with or be referred to one of our skilled clinical research coordinators.

After the Appointment

Our team will remain an available resource for both expected and unexpected concerns for you, your family, or local physician after your visit is over.

We can be contacted through MyChart, email, or phone based on your preferred mode of communication.

We can provide printed and online resources to help you or your loved ones better understand their rare disease diagnosis.

We will send a summary of the evaluation to the referring physician and/or primary care provider. When necessary, we plan care conferences with local medical teams to coordinate care.