Flu, COVID, & RSV: A Message to our Rett Community

Flu, COVID, & RSV: A Message to our Rett Community

Categories: Blog, Family Empowerment, Homepage

By Dr. Tim Benke, IRSF Medical Advisor

As many of you know, the United States is currently facing the triple impact of flu, RSV, and COVID-19. These respiratory illnesses are currently circulating at levels higher than usual for this time of year, creating a surge of patients seeking care in clinical offices, emergency rooms, and hospitals.

With the holiday season approaching, here are some key suggestions for our Rett community:

  • All families and individuals affected by Rett syndrome should be fully vaccinated against flu and COVID-19; there is no vaccine for RSV.
  • Avoid sick contacts. Stay home if you are sick. All should wear masks in public if possible. Cover your coughs and sneezes with your upper shirtsleeve. Wash your hands well and often.
  • Most can do well at home with a lot of attention to removing mucus by suctioning (RSV turns your nose into a mucus machine). Talk to your family doctor if you need guidance.

If you need to seek care because your loved one is struggling to breathe (breathing too fast, coughing, wheezing, chest is sucking or caving in with each breath, nostrils are flaring with each breath, high fever, or dehydrated and unable to eat and drink) you should call your family doctor right away and consider going to the emergency room immediately. Your loved one may need more aggressive care than you can provide at home to help them breathe.

From the AAP:
In the AAP’s interim guidance on caring for patients during a surge, the AAP notes there should be no delays in routine pediatric care, chronic disease management or immunizations.


Additional Resources for Respiratory Care:

Dr. Girish Sharma, professor of pediatrics at Rush University, discusses respiratory issues in Rett syndrome patients, including airway clearance techniques (17:00), mucus extraction (25:00), and hospitalization considerations (37:00). (Download the presentation deck)

Dr. Marianna Sockrider, pediatric pulmonologist at Texas Children’s Hospital, discusses common respiratory issues and interventions in Rett syndrome including when to worry (16:14) and when to seek care (28:50).

Medical Disclaimer: All information, content, and material provided is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.