COVID-19 Information
This is a continuous update provided from Dr. Benke - Rett Clinic Director, Children’s Hospital Colorado and Rettsyndrome.org Medical Advisor published on Rettsyndrome.org and copied here for your convenience:
Update from 11/20/20: Covid update: Advice regarding Thanksgiving (and the coming holidays).
The CDC has just posted regarding Thanksgiving and Covid:
Their suggestion is 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. This is creating a greater strain on our health-care system and providers. The safest thing to do is to continue stay in your bubble and wear your mask.
Updated 6/25/20:
As many states begin to re-open, we want to share the following message containing the re-opening status of the U.S. Rett Clinics and guidance from Rettsyndrome.org’s Medical Advisor on returning to therapies and schools.
Rett Clinic Re-opening Status
The following information summarizes U.S. clinics’ re-opening status for clinical care of Rett syndrome and research and clinical trial visits. This information was reported on June 19, 2020. Given regional differences and changing circumstances around the country, please contact your Rett clinic for updates and helpful information prior to making plans to travel.
Rett Clinic of Children’s Hospital Colorado
Re-Opened for Clinical Care for Rett (or Anticipated Re-Opening): Yes In-Person Visits, Virtual/Telehealth Visits, or Both: Virtual/Telehealth visits only Re-Opened for Research/Trial Visits: July 2020
For all other clinics please go to Rettsyndrome.org
We have not had any official reports of COVID-19 infections in the developmental encephalopathies (DE) (Rett Syndrome, MDS, CDD, FOXG1, etc.) community. While we continue to remain vigilant and concerned (see Messages below), so far, those few anecdotal reports we are aware of did not include the need for ICU care.
Our next big challenge is to navigate the return to therapies and school. The incredibly great importance of re-engaging therapies and education is balanced with the equally great need for the safety of our children with DE and their teachers, therapists, and support staff. The American Academy of Pediatrics has made some suggestions. These suggestions recognize that each community will have different factors and solutions in their approach to addressing the need of returning to school and therapies. In a nutshell, we all need to practice frequent hand-washing and mask-wearing to protect the entire community. A safe return to school requires flu vaccinations (and COVID vaccination) for all children and families when available.
Families should be working with their health care providers now to ensure that vaccinations are up to date.
Families should be contacting their school and therapists now to determine how to safely return this fall (or sooner).
Ensuring that your child’s Individualized Educational Program (IEP) is up-to-date now is essential. If you think modifications are needed, now is the time to pursue that. Families should remember that these requests for schools need to be provided to the school, signed and dated, in written hard-copy (not email).
Remember, if your child needs medical attention, get it (see Messages below).
Stay safe out there. We miss you and look forward to seeing you soon.
Updated 5/15/20:
In general, patients with developmental encephalopathies (DE) (Rett syndrome, MDS, CDD, FOXG1, etc.) might not do well with COVID-19. Should they become really sick with COVID-19, they could need ICU care. This care might include a ventilator and would likely involve treatment by providers not familiar with a patient’s DE. These providers may make unsupported assumptions about their DE, including life expectancy and quality of life.
The goal is to prevent patients with DE from getting sick if at all possible.
Consider gauging the risk of a DE patient getting COVID-19 in comparison to influenza:
-There is an influenza vaccine. We think all DE patients should have this.
-While there is an influenza vaccine, it’s not fully effective. Nevertheless, there is some degree of “herd immunity” due to the influenza vaccine.
-COVID-19 appears to be both more infectious and more deadly in adults.
-If a DE patient contracts influenza, there is an expectation that they will be treated. Treatment includes an environment where standard treatments (rapid testing, ICU care, personal protective equipment, and ventilators) are fully available.
-Even in the influenza season, we want our patients to be as active in the community as possible.
-Parents weigh all these risks during the influenza season.
Together, parents and providers weigh these risks when considering these scenarios:
-when to go out of the home for doctor visits
-when to go out of the home to participate in clinical trials
-when to send their children to school and therapy
Accessing healthcare while protecting your family member with DE
Most health care facilities will have necessary safeguards in place for COVID-19 (screening team members, rapid testing, personal protective equipment), making them as safe as possible. This is important, as we do not want families to avoid accessing healthcare when necessary, especially for treatable illnesses or even pneumonia from other causes (such as aspiration). School and therapy situations will vary and should be forthcoming with their safeguards so you can make decisions about when it is appropriate to resume in-person services.
COVID-19 may be with us for the near future. Patient safety is always of the utmost importance. Thus, telehealth should be the most common type of outpatient visit. For some clinical trials, telehealth may not be possible. Some needed services will still require a live visit (if sick or for things like botox injections, etc.). Please do not avoid in-person healthcare. Families should discuss with their care providers to figure out when in-person healthcare is essential.
When to expect the return to “normal”
When will this situation change back to “how it used to be”? This will change when we know that a standard treatment environment can be consistently assured. Discussion with your providers and staying informed about your community is very important to assess this. This standard treatment environment might be past the “second peak” after phased re-opening. Or it may not be until a COVID-19 vaccine is available. At some point, families will primarily weigh the risk of these activities, and it will be community dependent. Families and providers will each be weighing their situations and risk tolerances.
Until then, we encourage families to work with their providers in supporting their loved ones to the fullest extent possible.
Updated 3/31/20:
As the concern over the novel coronavirus (COVID-19) continues in our Rett, CDD, FOXG1, and MDS communities, with the situation changing daily, I want to remind you that staying up-to-date is the still the best remedy.
Regarding any appointment for clinic visits or clinical trials, please contact your provider. Most academic hospitals have curtailed routine visits with shifts to telehealth due to increased risk of community exposure and stay-at-home orders. Children's hospital is shifting to telehealth as much as possible. This shift may require rescheduling. Most clinical trial activities have been cancelled due to safety concerns, due to risk of COVID-19 exposure and related inability to obtain safety measures such as blood work and heart tests. These actions are not taken lightly and are very difficult decisions made by your clinical trial specialists carefully weighing the risks of harm. Clinical trial specialists are working closely with study sponsors to strongly encourage development of alterations of clinical trial protocols, where necessary, to allow re-entry of trial subjects when the situation improves.
There is no specific immune compromise for Rett Syndrome, CDD or FOXG1. There is immune dysfunction in MECP2 duplication syndrome patients. Due to low core tone, poor cough and airway clearance and abnormal breathing patterns there is concern that our patients are at high risk for not doing well if they get infected. There is high risk of contracting infection due to frequent hand mouthing. Strict social isolation is the only way of minimizing risk of infection at this time. When considering strict social isolation, families should balance their risk tolerance with their needs and local isolation orders. Please consider discussing with your providers.
Status 3/15/20:
With the recent news about COVID-19 in our communities, we know there is concern. The situation is changing day-to-day; staying up-to-date is the best remedy. Resources to do so include the CDC website, your local Children’s Hospital, and your primary care provider. Please do not assume that clinic visits or clinical trial visits are canceled unless your medical provider notifies you. Both of these are considered medically necessary; contact your provider with any questions or concerns.
Here are informative links to the CDC which are updated regularly:
CDC: https://www.cdc.gov/coronavirus/2019-ncov/index.html
Their FAQs regarding prevention and treatment:
https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html
Other suggestions related to our patients and caregivers:
Wash your hands and patient’s hands several times daily
Do not touch your face
Ill caregivers should reduce or eliminate contact and self-isolate per CDC guidelines
Wash surfaces, toys, devices and other items that are in contact with patients hands with disinfecting wipes several times daily
Caregivers that touch items and surfaces that are in contact with patients hands should wash hands immediately before and after touching these surfaces; this includes wheelchairs
School and therapy should continue unless in a highly endemic area where schools are closed, per CDC guidelines
Mask guidelines: see CDC website: https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html
Follow CDC guidelines about monitoring signs and symptoms of illness: https://www.cdc.gov/coronavirus/2019-ncov/about/steps-when-sick.html
Make sure you have up-to-date prescriptions with refills.
The Epilepsy Foundation also has some helpful tips, including creating an emergency supply of prescription medicines at this link: https://www.epilepsy.com/article/2020/3/concerns-abocoronavirus
