COVID UPDATE: Best practices according to our medical expert

COVID UPDATE: Best practices according to our medical expert

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As the COVID pandemic continues with surges and new variants, we have asked IRSF Medical Advisor Dr. Tim Benke, Rett Clinic Medical Director at Children’s Hospital Colorado, to provide information related to COVID-19 to keep our families and community healthy and safe at this time.


We continue to advise: unless told otherwise by their personal physician, all individuals with Rett syndrome and their families, caregivers, therapists, and teachers should be vaccinated

The Pfizer vaccine has been approved for those 5 and older.  The dose is based on age.  Booster shots are now recommended for those 16 and older.  See the CDC website for information on all vaccines.  The mRNA vaccines are safe and effective.  We continue to stand by our earlier recommendation to vaccine hesitancy shared on social media:  another day without vaccination is another day of lost therapies, opportunities, and life.  Now is not the time to ponder.  We encourage all to take the vaccine as soon as it is offered.

Key issues:

  • The vaccination allows us to get back to school, therapies, and activities.
  • In-person education and therapies work best. American Academy of Pediatrics (AAP) guidance supports in-person education.  AAP guidance, with that of the CDC, recommends that all wear face masks indoors.  However, we know that some individuals with Rett Syndrome cannot tolerate a face mask (but some can).  AAP guidance allows for accommodating this in what they call “the swiss-cheese model.”  Imagine your favorite sandwich with several slices of swiss cheese:  it is unlikely that the holes will line up to allow the mayonnaise to get through.  As long as everyone around individuals with Rett Syndrome is doing their part (vaccine, masks, hand-washing, etc.), leaving out just one slice of swiss cheese (a mask on an individual with Rett Syndrome) is tolerable.  AAP guidance includes support for shared decision-making between parents, schools, and medical providers.  As always, seek guidance and support from your primary care providers or Rett Specialist regarding using a mask and returning to school.
  • The delta and omicron variant are probably the first of many variants to raise concern. We do not know everything about these variants.  Both are thought to be more contagious than the original Covid-19.  The vaccines are still very effective against the delta variant, so all should accelerate their plans to get vaccinated.  We do not know yet if it causes more serious infections, especially in children.
  • Symptoms of Covid-19, including the delta variant, are similar to the flu. We cannot assume that Covid-19 in younger individuals with Rett syndrome will always be no worse than the common cold. We are collecting information from the community that suggests that very rarely Covid-19 infection may be serious.
  • We do not know of any serious reactions to the vaccine within our community, even those 12 and older.
  • Those who have been vaccinated are less likely to develop a serious illness due to Covid-19, but they could still transmit the disease to others. This is why those vaccinated should still practice CDC guidelines to prevent the spread:  face masks, social distancing, and frequent hand-washing.
  • Boosters are currently being recommended for those 16 and older and especially thouse who are immuno-compromised. If you are concerned that this may apply to your loved one, please speak to their physician.


  • Everyone (individuals with Rett Syndrome, families, care providers, teachers, and therapists) should be vaccinated as soon as the vaccine becomes available to them.
  • Take precautions around others.  Always wear a face mask (if tolerated) when indoors.
  • When possible, stay at least 6 feet from other people who are not from your household in both indoor and outdoor spaces.
  • Frequently wash your hands for at least 20 seconds.
  • Get tested if you have Covid symptoms, even if you are vaccinated.  Follow CDC guidance regarding isolation if positive.
  • If you have concerns about the vaccine and vaccines in general, talk to your primary care provider.  They can address specific circumstances and help you weigh the benefits of vaccination versus the real risks associated with Covid-19 in medically complex individuals with Rett syndrome.

What to Look for After Vaccine

The vaccine against COVID-19 can cause symptoms such as a sore arm after injection or even flu-like symptoms such as a headache or body aches in the days following the vaccination.  Consider discussing with your child’s primary care provider if acetaminophen or ibuprofen should be taken after the vaccination.

Clinical Trial Concerns

For those in clinical trials, it is unlikely that the vaccine will interfere with participation or be a safety issue, as this is considered routine medical care.  If you are in a clinical trial, talk to the clinician involved (they are listed on your signed consent form) if you have questions about this.  As always, inform your clinical trial clinician about any medicines (or vaccines) you take while in a clinical trial.  Taking a vaccine, including an mRNA vaccine, will not interfere with gene replacement therapy.

Medical Disclaimer: All information, content, and material provided in this document is for informational purposes only. Always seek your physician’s advice or other qualified health providers with any questions you may have regarding your personal situation.