Myhre Syndrome and COVID 19 - Staying Healthy

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Dear Families and Friends,

We hope you are healthy, and we truly understand the challenges you face every day in the best of times. We respect your skills and patience in this difficult era. Please know that we are thinking of you.

How to stay healthy when there is no cure for COVID-19?

We realize that people live in different parts of the world, where the experience has varied. Even within the United States, people have different viewpoints. We sympathize with the parents of restless children who are eager to get back to things as they were. It’s the summer, when we long to be outside and relax. However, our advice to keep your loved ones safe is the same:

  • Wash hands often.

  • Stay safe inside as much as possible.

  • If you go outside, wear some type of a mask. Children with learning differences or younger than 3 years, may have difficulty accepting the advice. It helps when caregivers at role models.

  • Practice safe social distancing.

  • Continue to maintain current vaccinations because of the risk of serious airway diseases.

COVID-19: Safe Re-entry of People with Myhre Syndrome into their Communities

While the COVID-19 pandemic is subsiding, the virus is still with us, and a vaccine is not yet available.  As people with Myhre syndrome and their families make plans to re-enter and re-engage in their communities, we know that you have many questions. Let’s answer a few.

  • When is it safe for my loved one to return into the community?

Please follow the guidelines from the local department of public health. For a child with Myhre syndrome, you would want to follow the safest lifestyle

  • My loved one with Myhre syndrome won’t wear a mask.  What can I do?

It helps if everyone in the family wears one with a good attitude. For the sake of our special children, try to make it fun, and avoid complaints. Try this thoughtful video https://www.youtube.com/watch?v=h6T75jZ6v3I&feature=youtu.be

  • How do I prepare my loved one with Myhre syndrome to get a COVID-19 test?

This could be a nasal swab or a blood test.  You might find this handout helpful. It provides a social story https://www.massgeneral.org/assets/MGH/pdf/children/lurie-center-nose-test-social-story.pdf

 How would a vaccine be developed for COVID-19?

  • Researchers around the world must first try to understand the virus itself. They want to understand the “pathways” it affects.

  • Collaboration is essential to be sure that there are enough patients to make comparisons available.

  • This CDC website reviews the many steps and provides you with some of the terms to develop a vaccine. https://www.cdc.gov/vaccines/basics/test-approve.html

If you are using telemedicine to meet with providers, here are some tips to make the most of a virtual visit (phone or video:)

  • Wipe the lens of the camera on your phone or pad which can get smeared

  • Write down a list of the “Top 5” questions you want to discuss so that you will have your thoughts organized.

  • Sit in a place with light shining on your face. Avoid having a window or lamp behind you.

  • Avoid walking and talking during the appointment.

  • If possible, obtain a weight on your child (or you).

  • Some people might be able to count the heart rate

  • A few might be able to perform a blood pressure measurement.

  • Invite your child to view the screen, too, for a brief exam.

Finding specific medications to prevent or treat COVID-19 infection is certainly the goal shared by patients and providers.

  • Some drugs have been widely discussed in the media and medical community, but are not ready for endorsement by our Board.

  • Several weeks ago, there were studies that showed losartan could be continued, which would include people with Myhre syndrome. If you have questions, we encourage you to discuss this with your Myhre syndrome providers, especially the cardiologist.

 Please let the MSF parent leaders know if anyone is having an especially difficult time. This is not easy, and we realize it is harder for some. We are learning new things about COVID-19 in children, and we will update this information in a future statement. This is an evolving situation. Try to follow the guidelines- stay at home, wash hands, wear a mask.

 Stay healthy. We hope this helps,

The MSF Professional Advisory Board