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PITAND is fine. I purposefully avoided asking about Strep. Please mark whether symptoms were dramatic onset or not. I probably also should have asked about OCD vs Tics -- so I may have to start another survey. Please keep suggestions coming here and I'll make another of these as I figure out what I should have asked.

 

I started plotting against population density (i.e., case per 1M people). Terribly annecdotal at the moment but based on zip codes seems currently tied to population density. I'll post more later as more data comes in (I hope). We're at 40 responses.

 

Buster

 

Hi folks,

 

Please take a moment to answer 4 questions on this survey monkey. My goal is to try to plot a map.

 

http://www.surveymonkey.com/s/V96RVXT

 

This should take < 1 minute to complete.

 

Buster

Hi Buster,

Do you want PITAND also or only PANDAS? We were diagnosed as pandas but now suspect PITAND. Waiting for tests.

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In the classic way of social network, can I ask folks to PM others who they know of but aren't on the map?

 

I'd love to get as many cases up here. Not sure what we'll do with the data yet -- and you might have to do this again once we figure out the map.

 

I don't have a way to automate survey monkey to geomaps but will keep the two synchronized as often as possible. There's another tool I might use that enables a shared map -- investigating now.

 

Buster

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In the classic way of social network, can I ask folks to PM others who they know of but aren't on the map?

 

I'd love to get as many cases up here. Not sure what we'll do with the data yet -- and you might have to do this again once we figure out the map.

 

I don't have a way to automate survey monkey to geomaps but will keep the two synchronized as often as possible. There's another tool I might use that enables a shared map -- investigating now.

 

Buster

My pediatrician tells me that he's treated 5 cases of PANDAS since learning about it from Allie (so, roughly, 1 case per month), and I know there are several cases being treated out of our immunologist's office, but I don't know who these people are.
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Hate to say this but I'm guess you'll find that frequency is also tied to average level of education achieved - bet that would correlate on the map as well.

Dr. K certainly would say so. I'd imagine that as long as it is self-reported, that will be true.

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I also think that knowledge of PANDAS and willingness to diagnose by local doctors will have an impact on the results. My son and I have been trying to spread information through emails, word of mouth and a newspaper article. Since doing these things I know of 2 more kids with actual PANDAS diagnoses due to learning about my DS and also 3 others who are seeking out evaluation with PANDAS as part of the question. However before this I can say very little was known about it in my area. How you could weigh that I have no idea but it does seem to have an impact.

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Buster

Answered the survey but it isn't showing up on the map. Zip code is 98074 (nr Seattle, WA)

Sorry, I don't have it automatically updating, I have to cut and paste between two web sites. I'm still seeing if there is another way to do this, but we're up to 87 people.

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Currently at 54 reports.

 

I just sent the link to about 10 families I've talked to at one time or other and posted the link to the survey on another OCD forum I belong to. I know of a least one other case in my town, one other in my pediatrician's practice, and two other near me from the other forum, so if you see more dots in northern CT. that might be them.

 

PS- if the person in West Hartford would like to PM me, that would be great.

 

Laura

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