My COVID Disability Q.
Canada’s New Q&A Hub for Canadians with Disabilities
In May 2020, CanChild, the Kids Brain Health Network, and the CHILD-BRIGHT Network launched My COVID Disability Q., a new Twitter Q&A hub for Canadian children and youth with disabilities as well as family members speaking on their behalf. Using My COVID Disability Q., youth and their family members are invited to ask questions relating to disabilities and the ongoing COVID-19 situation and get credible answers from some of Canada’s leading disability experts working in a wide range of fields including health, research, science, policy, leisure, and wellbeing.
What types of questions can I ask?
My COVID Disability Q. is a space for Canadian children and youth with disabilities, as well as family members speaking on their behalf, to ask questions that relate to both their disabilities and the COVID-19 outbreak. For example:
You may be wondering if your disability puts you at higher-than-average risk to COVID-19, or
You may be looking for recommendations for accessible leisure activities to do from home while your normal activities are suspended, or
You may be looking to connect with new youth or caregiver communities remotely, or
You may be looking for credible sources of information relating to your disability rights in Canada.
The possibilities are endless! We invite you to submit your question in whatever format is easiest for you (you can type it in, submit a video… you can even include photos!). We’re here to help amplify your questions so you can get answers. Note, however, that we will not provide medical advice.
How does it work?
It’s easy!
First, visit us on Twitter at @MyCOVIDQuestion to see what questions Canadians have asked our disability experts to answer already.
Then, submit your own question about COVID-19 using our online form
Our moderators at CanChild, the Kids Brain Health Network and the CHILD-BRIGHT Network will post selected questions on Twitter at @MyCOVIDQuestion using the #MyCOVIDDisabilityQ hashtag, brainstorm which experts in our vast networks could help answer, and amplify your question by responding and tagging these Canadian scientific, medical, political, policy or knowledge experts.
A conversation around your question will then unfold!
What kind of questions have been asked?
Adam Kirton, PI of the CHILD-BRIGHT SPORT project:
“Thanks for your question Kevin. There is no increased risk. COVID is a viral infection that does not appear to infect the nervous system or devices like shunts directly. In contrast, shunt infections are caused by bacteria that usually come from inside the body. Even if you had to go to hospital, infection risks there are lower than ever because people are in isolation and being extra cautious about infection prevention.”
Jennifer Zwicker, CHILD-BRIGHT Health Economics Team Member and Kids Brain Health Network Deputy Chief Scientific Officer:
“Thanks for this important #MyCOVIDDisabilityQ Dora Lee! In Canada youth with disability have a right to equal access to health care services. Ministers @CQualtro and @PattyHajdu provided provincial and territorial ministers of health with this guidance : https://www.include-me.ca/covid-19/resource/letter-provincial-and-territorial-ministers-minister-qualtrough-and-minister-hajdu. @ARCHDisability has also put together some helpful advocacy tips to consider: https://archdisabilitylaw.ca/resource/advocacy-toolkit-advocating-for-your-support-person-attendant-or-communication-assistant-to-be-with-you-in-hospital-during-the-covid-19-pandemic.
Keiko Shikako-Thomas, Principal Investigator of the CHILD-BRIGHT Jooay App project:
This question was originally submitted in French and answered in video format. To see the original question and answer, click the button below. Read on for an English summary of the answer:
“Having a routine is especially important. @KShikakoThomas suggests structuring your child’s time around their preferences. You know your child best! Do they prefer movement, quiet time, or perhaps music? Build a routine that has work, leisure, and relaxation components. Don’t forget to build in structured time for your child to communicate how they are feeling to you. Having a space where they are listened to and their needs are answered can be reassuring. If your child likes active play, use what you have at home before going out to buy expensive equipment! You can find ways to play with stairs, or by running around the building. Even jumping on the bed can be a DIY trampoline! Finally, take a look at the resources for inclusive leisure and mental health that @KShikakothomas identified: https://twitter.com/KShikakothomas/status/1263142335292026885?s=20”
Olaf Kraus de Camargo:
“Thank you for this question, Flavia. The answer depends where you live in Canada. In Ontario, your son needs to be registered to the #OAP (https://tinyurl.com/mycovidOAP). If you already have a service provider, contact this service provider. Many are offering virtual care and support that has been quite helpful to some of my patients. On the website https://tinyurl.com/mycovidASD you can also find free workshops that address common issues in Autism.”
François Bolduc:
“What is the connection between Kawasaki disease and COVD-19?
This connection is an emerging issue. Individuals who tested positive for COVID-19 were noted to have a major inflammatory response similar to Kawasaki syndrome. We now refer to it as Multisystem inflammatory syndrome in children (MIS-C). This connection was reported in a 6 months-old infant and has now been seen in more individuals. A recent report from Italy in the journal Lancet also reveals an increase in the number of cases of Kawasaki syndrome since the COVID-19 pandemic.
What symptoms should we be looking for in children?
According to the Centre for Disease Control (CDC), Kawasaki syndrome is characterized by a combination of symptoms including fever, rash, enlarged lymph nodes, as well as other symptoms that can lead to acquired heart disease.
The American Heart Association (2017) also developed a set of criteria to recognize Kawasaki syndrome. In the more typical form, the symptoms include fever associated with 4 or more of the following:
· redness of the eyes (conjunctivitis)
· changes of the lips or mouth
· neck lymph node enlargement
· skin rash, redness of the palms and soles
· firm swelling/thickening of the hands and feet
In addition to the symptoms listed above, it is crucial to look for abdominal and neck pain as well as vomiting and diarrhea as the gastrointestinal system can be involved.
There is also an incomplete form of the syndrome where patients can present partial symptoms. The criteria for this form include fever for 5 days or more, plus up to three of the criteria mentioned in the classic form.
For more information on the link between Kawasaki Disease and COVID-19, please see the CDC Summary on how to care for children with Multisystem inflammatory syndrome (MIS-C) during COVID-19 (scroll to the bottom of page).”
François Bolduc:
“Everyone’s immunological response to COVID-19 may be different. The advice is similar to what is recommended to the general population for most individuals to prevent risks.
Also, here are a few useful links I found that might be useful:
· 6 COVID-19 Safety Tips for Neurologic Patients
· Ask Your Neurologist: COVID-19 and Neurologic Conditions
· Large-Vessel Stroke as a Presenting Feature of Covid-19 in the Young
· What’s Behind the Sharp Increase in Large-Vessel Stroke Risk in Young, Healthy COVID-19 Patients?”