Survey results

[Buster]

On July 2nd, I started a survey to generate a map of potential PANDAS cases.

 

(see survey : http://www.surveymonkey.com/s/PANDASMAP )

 

Today, I noticed that we had over 190 respondents to the survey. Wow!

 

 

You can zoom in here:

http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

 

 

Buster

Edited August 13, 2010 by Buster

[Buster]

There was a second survey that about 99 people responded to. There were a lot of issues in getting the questions right, and this was not a formal research study with controls. However, with all those caveats, I thought I'd post snippets from that survey here:

 

 

65% were male children and 35% were female.

 

Buster

Edited August 14, 2010 by Buster

[cobbiemommy]

I think where you live must correlate to getting diagnosis. My son is the only dot in Missouri, but I can't believe he is truly the only one in Missouri with PANDAs. We traveled to New York and Chicago for diagnosis, though. So how many kids are out there, everywhere, that are being misdiagnosed?

[norcalmom]

I wonder if more girls have OCD and food issues and more boys tics... Maybe that is why more boys diagnosed. It would have taken us much longer to figure out it was pandas if ds wasn't ticcing.

Just not convinced boys more likely to get it. I remember our neurologist gave me info on Touettes, and primarily male disorder while OCD primarily female.

[thereishope]

Can you tell us what some of the "other" responses were? Were there any consistent write in answers that suprised you?

Edited August 13, 2010 by Vickie

[airial95]

Isn't autism more prevalent in boys too? I know my pediatrician thinks that PANDAS should be part of the spectrum...

[Buster]

Can you tell us what some of the "other" responses were? Were there any consistent write in answers that suprised you?

Bloody noses, hallucinations and shouting very loud all stood out in the OTHER responses.

[kimballot]

On July 2nd, I started a survey to generate a map of potential PANDAS cases.

 

(see survey : http://www.surveymonkey.com/s/PANDASMAP )

 

Today, I noticed that we had over 190 respondents to the survey. Wow!

 

 

You can zoom in here:

http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

 

 

Buster

 

Has anyone else put this map next to a map of reported lyme cases? Check on the second (blue) map at this link. http://www.aldf.com/usmap.shtml It could be due to density of population or some other factor.. but it is very interesting... but I am reading "cure unknown" right now so everything looks like lyme and I am questioning everything I read or hear from the medical establishment...

[Buster]

On July 2nd, I started a survey to generate a map of potential PANDAS cases.

 

(see survey : http://www.surveymonkey.com/s/PANDASMAP )

 

Today, I noticed that we had over 190 respondents to the survey. Wow!

 

 

You can zoom in here:

http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

 

 

Buster

 

Has anyone else put this map next to a map of reported lyme cases? Check on the second (blue) map at this link. http://www.aldf.com/usmap.shtml It could be due to density of population or some other factor.. but it is very interesting... but I am reading "cure unknown" right now so everything looks like lyme and I am questioning everything I read or hear from the medical establishment...

 

 

Map of PANDAS is correlated with population density -- almost perfectly. This could be because of a lot of reasons (like people in such populations are more likely to be on this forum :-))

[Buster]

Okay, here's a very interesting result in the data... (I might have to pull this out to its own thread)

 

First, please remember that this is not a controlled research study and is anecdotal -- but I sure would like a followup on this. For 35 girls and 65 boys:

 

Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness

Whereas 54% of boys had elevated ASO or Anti-DNAseB

 

In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture

whereas 14% of boys had this situation.

 

What I'm raising is that boys were ~4x more likely to have a rise in ASO or Anti-DNAseB

Whereas girls were ~2x more likely to be labeled as "carriers"

 

I'm doing other scrubbing on data, but these ratios seem to hold true despite filtering on other criteria.

 

Buster

 

 

I wonder if more girls have OCD and food issues and more boys tics... Maybe that is why more boys diagnosed. It would have taken us much longer to figure out it was pandas if ds wasn't ticcing.

Just not convinced boys more likely to get it. I remember our neurologist gave me info on Touettes, and primarily male disorder while OCD primarily female.

[kimballot]

On July 2nd, I started a survey to generate a map of potential PANDAS cases.

 

(see survey : http://www.surveymonkey.com/s/PANDASMAP )

 

Today, I noticed that we had over 190 respondents to the survey. Wow!

 

 

You can zoom in here:

http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

 

 

Buster

 

Has anyone else put this map next to a map of reported lyme cases? Check on the second (blue) map at this link. http://www.aldf.com/usmap.shtml It could be due to density of population or some other factor.. but it is very interesting... but I am reading "cure unknown" right now so everything looks like lyme and I am questioning everything I read or hear from the medical establishment...

 

 

Map of PANDAS is correlated with population density -- almost perfectly. This could be because of a lot of reasons (like people in such populations are more likely to be on this forum :-))

 

Yes - you're right... I think I have lyme OCD (that is obsessing about lyme disease)!!

[philamom]

Buster- I forgot to participate in the survey the second time around...I apologize! My pandas dd(9) never had elevated ASO/DNASE. Thanks- Melinda

[norcalmom]

That is very interesting. So thats why girls probably not getting diagnosed. Lets face it, usually the parents are diagnosing by searching for symptoms on line. Any thing stand out with kids that have had to get more than one ihigh dose vig?

Like high CamK or immune deficiency, sex, or tics, titers that are high or low?

Just wondering why some doctors think one ivig enough, and some are prescribing several in a row. Don't know if this is based on doctor or patient.. Or both.

I'm just dreading having to do it again. We are 7 days post ivig right now. Headaches stopped yesterday...

[Worried_Dad]

Interesting - our PANDAS son had frequent bloody noses and some hallucinations (especially when on prescription sleep or psych meds), but I never thought to mention those. No shouting very loud, though: he had sensory defensiveness and couldn't tolerate any loud noises.

 

 

Can you tell us what some of the "other" responses were? Were there any consistent write in answers that suprised you?

Bloody noses, hallucinations and shouting very loud all stood out in the OTHER responses.

[ajcire]

My ds had frequent nose bleeds too but I didn't mention it.... I have lots of friends with non pandas kids who also had/have frequent nose bleeds so I didn't consider it someting related.