Anonymous Survey Monkey

[Buster]

Here are the other questions I've heard from parents :

 

1) Overlay with Lyme incidence reports

2) Education level of mom [hey, what about Dads :-) ] -- came from Dr. K's web site

3) Likely correlation with incidence of acute rheumatic fever -- can we get that from CDC?

4) Check for confirmation of GABHS infection at time of onset/exacerbation?

5) Check for confirmation of mycoplasma pneumonia at time of onset / exacerbation?

6) Record age of onset

7) Record current age

8) Record age when parents heard about PANDAS

9) How did parents hear about PANDAS

10) Overlay with GABHS emm-type frequency

 

Are there other things -- I might not run the survey, but perhaps we can get one of the researchers to.

 

At the moment, the graph does seem correlated with population density -- lots of reasons why that might be true.

Edited July 5, 2010 by Buster

[Johnsmom]

I really think you need to get rid of #2!!!! I am not the sharpest knife in the drawer and I think there are other kids out there who have this but dont have a parent smart enough to figure it out!!!!!

 

 

Here are the other questions I've heard from parents :

 

1) Overlay with Lyme incidence reports

2) Education level of mom [hey, what about Dads :-) ]

3) Likely correlation with incidence of acute rheumatic fever -- can we get that from CDC?

4) Check for confirmation of GABHS infection at time of onset/exacerbation?

5) Check for confirmation of mycoplasma pneumonia at time of onset / exacerbation?

6) Record age of onset

7) Record current age

8) Record age when parents heard about PANDAS

9) How did parents hear about PANDAS

10) Overlay with GABHS emm-type frequency

 

Are there other things -- I might not run the survey, but perhaps we can get one of the researchers to.

 

At the moment, the graph does seem correlated with population density -- lots of reasons why that might be true.

[P_Mom]

I don't think number 2 is really a significant factor....just my opinion. I don't think it is about being smart enough....it is the medical community that is lacking the knowledge. Even if a parent is not well educated......or low income.....their children can still get health care....and when anyone (regardless of education level, etc) brings a child to the doc who has sudden onset of strange symptoms....it is the medical community who should be educated enough to give these kids a proper diagnosis! That is what the BIGGEST problem is!

 

Also, I think anyone is smart enough to goggle.......... and, anyone can walk into their local library and access the internet if they don't have it at home!

[peglem]

I don't think number 2 is really a significant factor....just my opinion. I don't think it is about being smart enough....it is the medical community that is lacking the knowledge. Even if a parent is not well educated......or low income.....their children can still get health care....and when anyone (regardless of education level, etc) brings a child to the doc who has sudden onset of strange symptoms....it is the medical community who should be educated enough to give these kids a proper diagnosis! That is what the BIGGEST problem is!

 

Also, I think anyone is smart enough to goggle.......... and, anyone can walk into their local library and access the internet if they don't have it at home!

And level of education does not necessarily reflect level of intelligence anyway!

[Johnsmom]

Thanks peglem! you just boosted my confidence!

 

 

I don't think number 2 is really a significant factor....just my opinion. I don't think it is about being smart enough....it is the medical community that is lacking the knowledge. Even if a parent is not well educated......or low income.....their children can still get health care....and when anyone (regardless of education level, etc) brings a child to the doc who has sudden onset of strange symptoms....it is the medical community who should be educated enough to give these kids a proper diagnosis! That is what the BIGGEST problem is!

 

Also, I think anyone is smart enough to goggle.......... and, anyone can walk into their local library and access the internet if they don't have it at home!

And level of education does not necessarily reflect level of intelligence anyway!

[Buster]

Okay, I'll drop #2. This came from Dr. K's web site which made me groan a bit.

 

Buster

 

I really think you need to get rid of #2!!!! I am not the sharpest knife in the drawer and I think there are other kids out there who have this but dont have a parent smart enough to figure it out!!!!!

 

 

Here are the other questions I've heard from parents :

 

1) Overlay with Lyme incidence reports

2) Education level of mom [hey, what about Dads :-) ]

3) Likely correlation with incidence of acute rheumatic fever -- can we get that from CDC?

4) Check for confirmation of GABHS infection at time of onset/exacerbation?

5) Check for confirmation of mycoplasma pneumonia at time of onset / exacerbation?

6) Record age of onset

7) Record current age

8) Record age when parents heard about PANDAS

9) How did parents hear about PANDAS

10) Overlay with GABHS emm-type frequency

 

Are there other things -- I might not run the survey, but perhaps we can get one of the researchers to.

 

At the moment, the graph does seem correlated with population density -- lots of reasons why that might be true.

[peglem]

Okay, I'll drop #2. This came from Dr. K's web site which made me groan a bit.

 

Buster

 

I really think you need to get rid of #2!!!! I am not the sharpest knife in the drawer and I think there are other kids out there who have this but dont have a parent smart enough to figure it out!!!!!

 

 

Here are the other questions I've heard from parents :

 

1) Overlay with Lyme incidence reports

2) Education level of mom [hey, what about Dads :-) ]

3) Likely correlation with incidence of acute rheumatic fever -- can we get that from CDC?

4) Check for confirmation of GABHS infection at time of onset/exacerbation?

5) Check for confirmation of mycoplasma pneumonia at time of onset / exacerbation?

6) Record age of onset

7) Record current age

8) Record age when parents heard about PANDAS

9) How did parents hear about PANDAS

10) Overlay with GABHS emm-type frequency

 

Are there other things -- I might not run the survey, but perhaps we can get one of the researchers to.

 

At the moment, the graph does seem correlated with population density -- lots of reasons why that might be true.

I'd be interested in an overlay of those who are immune deficient- IgG, IgA, IgE

[DebC]

When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.

[Buster]

When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.

I went into the data and it looks like there were two responses in the same zip code -- so DebC looks like another nearby.

[LNN]

When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.

 

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas.

[thereishope]

Well, I really don't feel intelligent. I didn't know I could click on the pin points until now. And I'm glad you dropped the education/occupation question as well. I can't think of any other questions. I would be curious to see if any of those zips correlate with autism clusters.

 

For us, that strep infection was the first one we ever had and it was at a time was strep was rampant in our area. In our region, one year it chicken pox, the next it was strep, this year it is Mycoplasma. So, not that this has anything to do with the map, but I wonder if there will be more cases of unexplained OCD and TS this year in my region as a result of PITAND triggered by Mycoplasma.

Edited July 5, 2010 by Vickie

[DebC]

I did find my data. You are absolutely correct, Buster! There were 2 in the same zip code and my pin happened to be behind the first.

[Megs_Mom]

Hey - I'm not sure I totally understand - if our dot is not showing, should we ask you about it (did we do the survey wrong) or are the blocks summarized? Thanks for doing this -

Hi Meg, it takes me a manual excel spreadsheet to transfer the responses from SurveyMonkey and then get them plotted on a map. I don't have a way to automate this step yet. So if your dot isn't showing it probably means I haven't gotten the batch done yet.

 

You can look at first post to see the time that I updated the map. I'm using the geographic centers of the zip codes.

 

Buster

 

got it - found "our dot". I think my problem was that I needed to zoom in. Thanks - I wonder if Charlotte (and some other) area will end up being higher than average, as there are a number of Neuros now that have or currently treat - and I think 2 Peds (at least) and a immuno that are looking for it.

 

Hi 28262 . PM me if we don't already talk!

[Buster]

When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.

 

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas.

 

Hi Laura, I see two in your zip code. You have to zoom in quite a bit to see the two. I think one says yes and the other no on fever.

 

I can see why surveys give everyone unique ids :-)

 

Perhaps in the future, I could ask people for a unique code -- that way they don't have to use their login, but can see the record.

 

Buster

[LNN]

When I checked the map, two of my answers were flipped. They were "Sudden Onset" and "Fever". It was probably an error on my part, but Buster asked if I could post to see if anyone else had the same problem once they checked their results on the map.

 

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas.

 

Hi Laura, I see two in your zip code. You have to zoom in quite a bit to see the two. I think one says yes and the other no on fever.

 

I can see why surveys give everyone unique ids :-)

 

Perhaps in the future, I could ask people for a unique code -- that way they don't have to use their login, but can see the record.

 

Buster

 

Got it. I know the other dot. Thanks!