This week the ASPIRE Professional Advisory Board (PAB) met to plan projects to work on that will benefit our community.We look forward to sharing those projects with you upon completion.
The coronavirus, of course, has affected everyone’s lives, including members of our PAB. We thank them for their tireless efforts, especially during this pandemic, as many are on the front lines helping families in person, via telemedicine, and in their lab. We asked them to share their thoughts on COVID-19 with the ASPIRE community.
Dear ASPIRE Community,
By now, we are all becoming experts in the latest Coronavirus, SARS-CoV-2. Like other viral epidemics, it starts slowly and gains speed very, very rapidly, that is why so many of us are under “shelter-in-place” or “social distancing” restrictions. Please take the advised precautions to keep yourself and your family safe. In essence, the prevention of new infections is still the best means of bringing the epidemic under control, and it’s definitely the best way to protect you and your loved ones. We have found the best information is coming from WHO and the CDC, but you should also check to see if your state/local health department has provided any information specific to your community.
How does SARS-CoV-2 impact our children with PANS/PANDAS?
The short answer is, “We don’t know”; we haven’t had enough experience with this virus to know if it will behave like common colds (which are also caused by Coronavirus) or be more similar to the H1N1 influenza virus. Experience across the globe (particularly in China) demonstrates that COVID-19 causes relatively mild infections in children and youth, (no symptoms or a mild cold), so it is not unwise to be hopeful that a COVID-19 infection could have relatively little impact on PANS/PANDAS symptoms.
While the virus itself may not pose a major risk, there may be harm from the current state of anxiety and panic gripping our nation. To the best of your ability, don’t let that panic seep into your home! Turn off the news to avoid exposing your child to a nearly constant barrage of “Updates” on the “COVID-19 CRISIS”. Talk with your child about the difference between good hygiene and obsessional handwashing. Engage your child’s “detective skills” to spot differences in how they feel when handwashing/using hand sanitizer after public outings versus the OCD rituals. If your child is too young or too ill to participate, then de-emphasize handwashing and practice self-quarantine instead.
Most importantly, take good care of yourself! Remain socially connected, even when isolated at home. Eat healthy foods (and a few yummy treats), get enough sleep and exercise, and make sure that you’re getting outside for some “heliotherapy” every day.
Best wishes,
Susan Swedo, MD on Behalf of the ASPIRE Professional Advisory Board
Gabriella True
