COVID Update: Rett syndrome and the COVID vaccine

HomeCOVID Update: Rett syndrome and the COVID vaccine

COVID Update: Rett syndrome and the COVID vaccine

Categories: Blog, Homepage

1.25.21 COVID UPDATE: Best practices according to our medical expert.

Last month, we shared our recommendations from the Rett Medical Community regarding the Covid-19 vaccine: unless told otherwise by their personal physician, all individuals with Rett syndrome and their families, caregivers, therapists, and teachers should be vaccinated. We are awaiting approval for those younger than 16 for the different vaccines and will keep you updated as information becomes available. In response to hesitancy posted on social media, we said: another day without vaccination is another day of lost therapies and opportunities and life.  Now is not the time to ponder.  We encourage all to take the vaccine as soon as it is offered.

Key facts:

According to the CDC website, we do not know when there will be enough people vaccinated to achieve herd immunity.

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 this is might not be the case.

At the moment, only a small fraction of the community (healthcare workers, nursing homes, first responders) has received the vaccine.

Those who have been vaccinated are less likely to develop 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. (See blog from October 13, 2020).

Projection:

If most people are vaccinated by mid-summer, the presence of Covid-19 in the community will be reduced to safer levels soon after that.

Recommendations:

Families, care-providers, teachers, and therapists should be vaccinated as soon as the vaccine becomes available to them.

While visiting the doctor may now be even safer, we cannot let our guard down yet for everything else.

  • Always wear a face mask when you leave your home.
  • 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.

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.

The vaccine against COVID-19 can cause symptoms such as a sore arm after injection or even flu-like symptoms 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.

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.

December 11, 2020
By Dr. Tim Benke, Rettsyndrome.org Medical Advisor

COVID update: Rett syndrome and the COVID vaccine

The following statement is offered to the Rett syndrome community, with unanimous approval of our Medical Advisory Board: Dr. Liz Berry-Kravitz, Dr. Tim Benke, Dr. Eric Marsh, Dr. Jeffrey Neul, Dr. Alan Percy, Dr. Sasha Djukic, Dr. Robin Ryther, Dr. David Lieberman, Dr. Daniel Glaze, Dr. Tim Feyma

The CDC has recently posted regarding the COVID vaccine:  https://www.cdc.gov/coronavirus/2019-ncov/vaccines/index.html

Last night, an FDA Advisory panel voted to recommend the approval of the Pfizer COVID vaccine for emergency use in individuals 16 years and older. We hope that this will be the first of many vaccines that will become available over the coming months. The key to getting us all back into schools and therapies and life is for as many as possible to get the vaccine:  teachers, therapists, doctors, families, caregivers, and most importantly individuals with Rett syndrome.  Rett syndrome alone is not a contraindication to receiving the COVID vaccine, like any other vaccine. While it may not yet be approved for all ages, when it is, the Rett Clinical Community stands behind universal vaccination, especially for individuals with Rett syndrome.  For those Rett patients who are too young to be vaccinated, we strongly urge you to have all primary caregivers get vaccinated to protect them until a vaccine is available in their age range.

Another day without vaccination is another day of lost therapies and opportunities and life.  Now is not the time to ponder.  We encourage all to take the vaccine as soon as it is offered.

November 20, 2020
By Dr. Tim Benke, Rettsyndrome.org Medical Advisor

The CDC has just posted regarding Thanksgiving and Covid:

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/holidays/thanksgiving.html

They suggest that the safest way to celebrate Thanksgiving (and the coming holidays) is to celebrate at home with the people you live with.  This seems to be very prudent so that we can all celebrate many more Thanksgivings together.

In many of our communities, the number of infections continues to increase, creating a greater strain on our health-care system and providers.  The safest thing to do is to continue to stay in your bubble and wear your mask.

October 13, 2020

By Dr. Tim Benke, Rettsyndrome.org Medical Advisor

Here is one big reminder:
Get a flu shot as soon as possible!

  • Please see prior guidance on this blog. Not much has changed: catching Covid-19 is still a risk to be avoided by all.
  • Outside the home: The child should wear a cloth mask if they can tolerate it. If they cannot tolerate a mask, then maybe they should not go out, especially if they will be indoors or in other situations where social distancing cannot be followed and exposure risk is high.
  • Frequent handwashing by all.
  • In school: Teachers, therapists should wear masks. If possible, other students should wear masks.
  • Family members should wear masks outside the home.
  • Family visits over the holidays pose a risk. Consider having visitors tested or quarantined first.
  • Social distancing (6 feet), as recommended by the AAP and CDC, must be observed as much as possible.
  • Consideration of school attendance on a reduced schedule limited to allow participation in therapies only in order to further increase social distancing.

The American Academy of Pediatrics (AAP) has updated their guidance slightly listed on its page: https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/covid-19-planning-considerations-return-to-in-person-education-in-schools/. Please note that these may change as the situation evolves, especially with the development of a vaccine. From the AAP page and section on Special Education and Students with Disabilities:

“Every child and adolescent with a disability is entitled to a free and appropriate education and is entitled to special education services based on their individualized education program (IEP). Students receiving special education services may be more negatively affected by distance-learning and may be disproportionately impacted by interruptions in regular education. It may not be feasible, depending on the needs of the individual child and adolescent, to adhere both to distancing guidelines and the criteria outlined in a specific IEP. Attempts to meet physical distancing guidelines should meet the needs of the individual child and may require creative solutions, often on a case-by-case basis. Additional safety measures for teachers and staff working with students with disabilities may need to be in place to ensure optimal safety for all.”

“The impact of loss of instructional time and related services, including mental health services as well as occupational, physical, and speech/language therapy during the period of school closures is significant for students with disabilities. All students, but especially those with disabilities, may have more difficulty with the social and emotional aspects of transitioning out of and back into the school setting. As schools prepare for reopening, school personnel should develop a plan to ensure a review of each child and adolescent with an IEP to determine the needs for compensatory education to adjust for lost instructional time as well as other related services. In addition, schools can expect a backlog in evaluations; therefore, plans to prioritize those for new referrals as opposed to re-evaluations will be important. Many school districts require adequate instructional effort before determining eligibility for special education services. However, virtual instruction or lack of instruction should not be reasons to avoid starting services such as response-to-intervention (RTI) services, even if a final eligibility determination is postponed.”

If necessary, consider asking your child’s physician or provider to provide a letter to the school with advice to assist with advocating for your child. This advice may include a recommendation, based on your situation, regarding return to school versus staying at home.

August 11, 2020
By Dr. Tim Benke, Rettsyndrome.org Medical Advisor

While we do not have any specific data, such as reports in the literature, children with Rett syndrome may be at high risk of complications due to Covid-19.  Children with Rett syndrome are prone to stereotypies in which they constantly bring their hands to their mouths.  Not only does this make it difficult to wear a mask at all times, but it makes it difficult to continuously keep the child’s hands clean. These issues increase the risk of exposure to Covid-19.

Currently, the recommendations from the American Academy of Pediatrics (AAP) in regards to attending school and wearing a mask are listed on their page: https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/covid-19-planning-considerations-return-to-in-person-education-in-schools/.  Please note that these may change as the situation evolves, especially with the development of a vaccine.

It is recommended that special needs children return to school if it is safe in the estimation of the parent and school based on the AAP guidelines.  School is often the primary provider of therapies, and patients with Rett syndrome have regression or stagnation of skills without the provision of regular therapy.  Each family and school district must weigh the risks and benefits based on their individual situations. 

Recommendations, based upon the current guidelines, are that the following steps should be undertaken to help protect the child in consideration of returning to school:

  • The child should wear a cloth mask if they are able to tolerate it.
  • The child’s hands will be sanitized multiple times a day to attempt to decrease germs being introduced.
  • Teachers, therapists should wear masks at all times.
  • If possible, other students should wear masks at all times.
  • Social distancing (6 feet), as recommended by the AAP and CDC must be observed as much as possible.
  • Consideration of school attendance on a reduced schedule limited to allow participation in therapies only in order to further increase social distancing.

Consider asking your child’s physician to provide a letter to the school with advice.  This advice may include a recommendation, based on your situation, regarding return to school versus staying at home.

Read additional COVID-19 community updates here.