Anybody up for an educational campaign?

[kimballot]

I received an email invitation to take an "educational" quiz about children's mental health from childmind.org.

 

The quiz was interesting and can be found here http://quiz.childmind.org/ - and they say that if you take the quiz you earn $1 for children's mental health.

 

I received the invitation from another PANS parent who is a member of this forum and a dear friend, so I am thinking some of you may also have received the same invitation.

 

When I took the survey (which was clearly geared toward main-stream child psychiatry), I gave them my email address, and then I received a follow up thank-you email that stated:

 

We have added you to our mailing list. Soon you'll be receiving email updates about the Speak Up for Kids campaign. Remember to join us online at childmindlorg/speakup in May for a month of live-streamed public education events and on-demand content from experts in the fields of mental health, neuroscience, education, public policy and advocacy.

 

Ok - so I clicked around to see what they had to say about PANS - figuring that might be something I would want to talk about, and here is what I found:

 

 

Under "myths about OCD" it says:

 

You can get OCD from strep throat.

Strep throat is associated with the development of temporary neuropsychiatric disorders that mimic OCD, but they're not OCD. The phenomenon is known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), and occurs in rare instances when the body's immune system reacts to the strep infection by generating antibodies that, for whatever reason, attack the basal ganglia. This can result in a rapid onset of OCD symptoms. The good news is that these disorders are temporary and disappear quickly, lasting only until the strep throat is cured and the immune response is over.

 

(http://www.childmind.org/en/myths-about-ocd/)

 

 

Ok.. so is anyone out there interested in doing some SPEAKING UP about OUR kids in May?

[blakes_mom]

Im up for it. I took the quiz and signed up. Cant wait to do some schooling in May.

[LNN]

I think the person to contact initially is kathryn.morrissey@childmind.org She runs the Speak Up for Kids campaign. Caroline Miller is their Editorial Director and I get periodic newsletters from her but I can't find her email on their website. When I get the next newsletter, I'll post it. We may or may not be able to change their views on Pandas but I'd at least like to try to get them to remove that nonsense about the myth and the going away easily drivel.

[LNN]

So I sent an email and it was forwarded to the Editorial Director who manages the web site. I received this response:

 

"Thanks for the information and the links, which are excellent. I will take down the "myth," which reflected the thinking of our OCD specialists when we wrote the guide. And I think it's a good idea to do a story updating our understanding of this, based on the work Sue Swedos and others have done to redefine the syndrome and update the critieria.

Please thank your friend for alerting us to the problem. It's very helpful. Above all we don't want to pass on misinformation."

Caroline Miller
Editorial Director
Child Mind Institute

 

If you have time, please write a brief note thanking them for their prompt action and willingness to learn more! (and please take their quiz - they earned that dollar IMO).

[tpotter]

WOW. Such a quick positive response. Beautiful.