Connect With the Experts – Pulmonary Management in Winter Season

As we embark into the winter season, it’s imperative that individuals with Duchenne and Becker muscular dystrophy are prepared to manage their pulmonary health and understand when medical intervention is needed.

PPMD’s VP of Clinical Care, Rachel Schrader was recently joined by a panel of experts to discuss how to manage respiratory symptoms at home, when to seek medical care, and what to expect if a hospital or urgent care visit is needed.

Our panel included 3 pulmonologists:

• Daniel Sheehan, PhD, MD (University of Rochester Medical Center)
• Courtney Gushue, DO (Nationwide Children’s Hospital)
• Andrew Sokolow, MD(Vanderbilt University)

Watch: Webinar Recording

A few key takeaways from the webinar

• When you or your child is sick, it’s important to know who to call and when for guidance. You can find a list of CDCC Contact Numbers and Additional Emergency Resources here.
• Know where to take your child when they are sick.
  • Primary Care Provider: for acute illness appointments, general symptom management guidance and testing for Flu/Covid/RSV
  • Urgent Care: for Flu/Covid/RSV testing, worsening respiratory illness
  • Emergency Room: for worsening respiratory illness including increased work of breathing, O2 sat less than 95%, coughing or wheezing fits, lethargy
• Always remember to bring your equipment with you to the hospital if you can, whether during an emergency or a planned admission. This includes cough assist, bipap machine and mask, emergency plan, and important documents.
  • Some important documents to take with you include current PFTs and echo, Bipap/cough assist settings, PJ’s protocol and legal documents.
• Talk with your neuromuscular team about steroid stress dosing during times of illness. Be sure to refer to PJ Nicholoff Protocol for dosing recommendations.
• When you or your child is sick, you may need increased time or settings on your bipap and/or cough assist. Sometimes invasive procedures may be recommended. This is something you should be prepared for and have conversations early on with your care team to help with decision making during an acute respiratory event.
• Most importantly, be sure your neuromuscular team knows what is going on with you or your child. If you are being seen at a different hospital than where your team is and you need advice/support, have your neuromuscular team call the local hospital for a physician to physician consult. It is always okay to ask for input from your main neuromuscular team. If you feel your requests are not being met, most hospitals have a patient advocate on staff who can help work as a liaison between you and the physicians to ensure your voice is heard as part of the care plan.

Questions?

Reach out to the PPMD’s care team at careteam@parentprojectmd.org or schedule a meeting with us. Additional information around Care for Lung Muscles can be found here.