What to Expect

Summary

Families can expect a thorough, well-organized evaluation process when entering an aerodigestive program. Care is typically delivered through coordinated clinic visits, where multiple specialists see your child on the same day (or within a very close time frame). It may also involve multiple specialists, diagnostic testing (often coordinated when possible), and a team meeting to formulate a treatment plan. Here’s an overview of the typical journey through an aerodigestive program:

Pre-Visit Planning

Comprehensive Clinic Visit

Your first in-person visit is often a single-day clinic where you will meet multiple specialists as a team. For example, an ENT doctor, pulmonologist, and gastroenterologist (and possibly other specialists, like a speech therapist or nutritionist) will all see your child on the same day. Each specialist will evaluate your child from their perspective, but they will also work with the rest of the team. By the end of the day, the team will usually discuss their initial findings together and provide guidance on next steps. These appointment days can be long, so bring snacks and entertainment, and if possible, leave other siblings at home so you can focus. Bring any records, questions, and family members that you think will be helpful.

Diagnostic Testing

Based on the clinic evaluation, the team will likely recommend certain tests. One advantage of an aerodigestive program is that many tests can be scheduled in a coordinated manner. For instance, if your child needs an airway examination and a GI endoscopy, the team may schedule these procedures on the same day while your child is under one anesthesia (when the tests can be done together safely and easily). The tests are done while your child is sedated (or “put to sleep” temporarily). They may involve flexible laryngoscopy or bronchoscopy, upper GI endoscopy, or evaluations of swallowing function (such as X-rays, rigid bronchoscopy, or MBS of the airway or digestive tract). Sleep studies (like see how your child breathes during sleep) or lung function tests or other diagnostic tests may be needed. There are also other procedures (if you’re treating a related condition, and the team thinks the tests are warranted) that may be scheduled together if possible. They often use anesthesia. Other tests could include swallow studies (to see how your child swallows liquids and foods), imaging studies (like an X-ray or MRI of the airway or digestive tract), sleep studies (to see how your child breathes during sleep), or lung function tests. Some evaluations can even be done while you are in town for the initial visit (for example, a swallow procedure if you’re traveling from out of town).

Team Discussion and Treatment Plan

After all necessary evaluations (clinic visits and any diagnostic testing), the aerodigestive team meets together to discuss the findings. They review test results and each specialist’s assessment. Together, they come to a consensus on your child’s diagnosis (or underlying issues) and develop a comprehensive treatment plan. You will then be contacted (often by a coordinator, specialized nurse, or lead doctor) with the recommendations in detail or to schedule a plan visit. They will outline the next steps, which could include medical treatments, surgical procedures, therapy (such as feeding therapy), and answer any questions you have.

Follow-Up Care

An aerodigestive team will typically arrange follow-up appointments to monitor your child’s progress. This may include regular check-ups with the entire team or with individual specialists as needed. They may also repeat certain tests (like repeat chest X-rays, imaging studies, or sleep studies) to see whether treatments are working (for example, repeating a swallow or breathing test to confirm improvement). Many families return for periodic multidisciplinary clinics, while others may have local follow-ups and then use internet or by phone to communicate with the aerodigestive team. Additional therapy or educational programs may be offered for some programs (like feeding programs for developmental support), or even accommodation (like Ronald McDonald House if you have to fly to a city for care; a special aerodigestive community if it’s a facility or campus that has special parent workshops or support groups for families of children with technology dependence (e.g., traches or feeding tubes) or complex medical needs. Social workers or specialists or family care coordinators often help guide families as needed. Once your child’s care team feels they are stable, you may graduate from the clinic. 

Communication is Key

Throughout this process, communication is key. You will have a coordinator or lead contact in the team who can help navigate scheduling and ensure you understand each step. Families can expect a thorough explanation at each stage — before a test or procedure (what to expect at each stage), during the review of results, and at the end of the initial aerodigestive evaluation. You should have a clear understanding of your child’s condition and a roadmap for treatment.

Remember: taking care of yourself is also important. Seeking support is not weakness; the aerodigestive team wants you to feel empowered and supported. Don’t hesitate to reach out through the phone/groups or via your care team to help you find local support resources or support networks. With the right resources and support, you will feel more empowered to handle the challenges and celebrate the milestones through your child’s aerodigestive care journey.