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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.

 

Please use zip code where you were when your child first exhibited symptoms. If you aren't in the US, please provide city/country.

 

This isn't yet automated -- so refresh won't be immediate

 

I'll see if there is a way to maintain a shared map once this version is done.

 

Buster

 

Current results for 163 responses are at http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

Edited by Buster
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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,

I find it hard to answer question no. 3 : "How sure are you your child has PANDAS".

Am I to choose "Definite (IVIG seemed to cure)", if I (and the doctors) am absolutely sure, that my child has PANDAS, but don´t believe or experience, that IVIG is a permanent cure ?

Or am I to choose "Very Likely ..." given the above mentioned ?

Couldn´t/shouldn´t it be possible to answer : "Definite (has had all clinical symptoms during PANDASexacerbations (and have periods without symptoms between PANDASexacerbations), prednisone burst and antibiotics are allways effective, IVIG brings remission, however my child has new PANDASexacerbations whenever he is infected or even exposed to strep (and/or other bacterias and vira) even after IVIG" ?

;)

Edited by PANDAS_Denmark
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Good point, I was just trying to see where people were. Maybe I'll drop "definite" or make it into very, very likely :-)

 

My real goal here is to try to plot those that are likely or higher on a map.

 

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,

I find it hard to answer question no. 3 : "How sure are you your child has PANDAS".

Am I to choose "Definite (IVIG seemed to cure)", if I (and the doctors) am absolutely sure, that my child has PANDAS, but don´t believe or experience, that IVIG is a permanent cure ?

Or am I to choose "Very Likely ..." given the above mentioned ?

Couldn´t/shouldn´t it be possible to answer : "Definite (has had all clinical symptoms during PANDASexacerbations (and have periods without symptoms between PANDASexacerbations), prednisone burst and antibiotics are allways effective, IVIG brings remission, however my child has new PANDASexacerbations whenever he is infected or even exposed to strep (and/or other bacterias and vira) even after IVIG" ?

;)

Edited by Buster
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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

 

Buster, I was going to submit 2 survey's since I have 2 dd's but it only let's me submit one. Maybe that's not an issue for your map.

 

I selected don't know for sudden onset since they got this so young and it was not easy to tell what was pandas at the time.

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Done. On the fever question...

 

I don't know if my son had a fever within 2 days, but he DID have a fever within a week or so past sudden onset. I can look up the exact time frame, if needed.He had a mysterious 102.4 fever that lasted one day then went away. Within a few days apart. so did my other 2 non-PANDAS kids. To get more eerie...all 3 kids had the same fever temp! My non-PANDAS kids did get tested for strep at the time and neither of them had strep.

 

Now, with subsequent exacerbations, I don't belive that fever occurred. Just the first time.

Edited by Vickie
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Good survey - I answered very very (1st level), although we did not have IVIG (have not done - yet) - but we do have clinical symptoms (which #2 did not reference), pred and abx responsiveness, positive CamK, and confirmation by 3 specialists - of PITANDS/PANDAS.

 

I answered "no" on fever. But her first episode was at 3, and I was out of town on the day it started (ah the guilt) - she started washing her hands enough in Feb to have a serious hand rash. That was the very first sign, and I think because her skin is so sensitive, we saw the signs a week before normal. A week later, she had fear of choking, severe seperation anxiety, fear of germs, contamination, etc. About 5 days after that, she threw up unexpectedly, and was very hot at home - but when we got to doc's office a few hours later, she had severe double ear infection. So she got an abx fortunately. No fever noted at pediatrician. I heard of PANDAS about a week after that, but did not know about titers and no one ever did a strep test, until she had another exacerbation 3 years later.

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It only lets us submit for one child, and many of us have more than 1. Both my children presented differently (one was sudden onset, and the other wasn't...as far as we know.)

 

If you have a second computer (husbands, etc) try using that one & I think you can do it again. I think it knows the ip address.

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Considering I live in an area where most kids will be told to seen a particular neurologist that isn't keen on PANDAS, I think a lot of kids in my area go misdiagnosed. So, I would be curious to know what the "OCD/TS" rates are in Ohio. Do they keep tabs on things like that?

Edited by Vickie
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Hi Buster - I also found it difficult to distinguish between #1 and #2. We've not yet done IVIG but everything else says PANDAS. Also Cunningham test said PANDAS. I picked 2 - maybe should have picked 1?

I picked #2 also because we have not done IVIG. Thats ok because everything is a maybe, Maybe I should try a diffirent Dr. Maybe a new abx, Maybe things will be good tomorrow, Maybe, Maybe, Maybe....

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Very interesting map. Seems to me like the clusters may be driven by population density in combination with where the doctors are who recognize PANDAS...

 

Technically our little dot there in Southern Cal should be moved to Northern Cal (94549), for my older son. My younger started symptoms at 92352.

 

PANDAS Denmark looks so lonely over there! If I were an infectious disease person, I would note that the family over there at 92352 (us) travels frequently to Denmark, and that in 2006, one of us (me) was forced by her job to go over there sick, touching doorknobs and coughing all the way... I'm sure there is no relationship there, but it reminds me of those charts that were created in the early AIDS days, linking cases all over the world.

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