Anonymous Survey Monkey

[JAG10]

I'm just curious, with 100 responses why there are decimals and not all whole numbers for #1?

[justinekno]

I have a sister in Utah whose son (12) started exhibiting rages and severe ocd overnight. I suggested she get him tested for strep but the dr only did a culture (no bloodwork) and gave my nephew a prescription for prozac. I still think he could have PANDAS but my sister believes the dr. I wonder how many other cases like that are in states where it shows no cases.

 

Well, I'm just thinking..the next time I have children I'm moving to Montana..tee hee!

Mary

from Michigan

[T_Mom]

I cannot help but wonder re: the "location."

--could it represent possible lack of sunshine for the NE (but then where are the folks in the NW) or

maybe it shows those of us who found the ACN forum and have time enough on our hands to frequent it?...

Where are the rest of the CA folks... !

 

I am moving to Hawaii--

Edited July 4, 2010 by T.Mom

[thereishope]

How does the map work? Is it one pin point per each response or for each zip/close zip code?

[Buster]

I'm just curious, with 100 responses why there are decimals and not all whole numbers for #1?

Because one person skipped the question -- so there were actually 99 reports on #1.

[EAMom]

I am moving to Hawaii--

 

Yeah. The problem is that these are the folks that are online/participating in the study. I know that there are PANDAS cases in Hawaii. There is a doc that moved to the Bay Area from Hawaii (was it Diana, who met her?, I don't remember) who said PANDAS is well acepted in the medical community there. I have another friend who is an MD in Hawaii. She has a few cases that are diagnosed PANDAS (came to her diagnosed). However, her clientelle is military folk, so I'm not certain where the onset of PANDAS was.

 

There's also this study on adolescents in Hawaii. INterestingly, I don't think the article (written in 2003) ever says "PANDAS"...just strep, rheumatic fever, OCD, and poststreptococcal autoimmune neuropsychiatric syndrome: http://archpedi.ama-assn.org/cgi/content/full/157/7/665 Here is an excerpt:

 

Our finding of comorbidity between OCD and depressive symptoms, anxiety symptoms, and aggressive symptoms is similar to findings from previous studies of postinfectious and other subtypes of OCD.14 In our study, symptoms of depression was the single best predictor of OCD prevalence. These results suggest the need to consider comorbid illnesses in youth who have OCD and/or to consider OCD and its possible origins in children who initially have symptoms of anxiety, depression, or aggression.

 

If a poststreptococcal autoimmune neuropsychiatric syndrome had affected a significant portion of our study sample, then we might have expected mostly prepubertal onset of OCD, a high prevalence of tics, and a high rate of comorbidity between OCD and tics. However, our study was limited by the unavailability of any information about remote history of OCD symptoms and tics and by the absence of any other assessments for tics (which may not be optimally measured by self-report). Future studies would need to include a larger sample, other clinical evaluation, and a broader age spectrum, and/or additional information about longitudinal course of OCD symptoms and tics29 to more satisfactorily assess this possibility.

Edited July 4, 2010 by EAMom

[Buster]

How does the map work? Is it one pin point per each response or for each zip/close zip code?

Good question. I've adjusted the map so that same zip codes are bumped by a tiny amount (like a block). I'm trying to respect people's privacy at the same time to get a general idea of where stuff is happening. Hopefully I've struck the right balance.

 

Please see if you can see groupings now....

 

Buster

[T_Mom]

Yeah. The problem is that these are the folks that are online/participating in the study. I know that there are PANDAS cases in Hawaii. There is a doc that moved to the Bay Area from Hawaii (was it Diana, who met her?, I don't remember) who said PANDAS is well acepted in the medical community there. I have another friend who is an MD in Hawaii. She has a few cases that are diagnosed PANDAS (came to her diagnosed). However, her clientelle is military folk, so I'm not certain where the onset of PANDAS was.

 

There's also this study on adolescents in Hawaii. Interestingly, I don't think the article (written in 2003) ever says "PANDAS"...just strep, rheumatic fever, OCD, and poststreptococcal autoimmune neuropsychiatric syndrome:

http://archpedi.ama-assn.org/cgi/content/full/157/7/665 [/i]"

______________________________________________________________________

 

Oh my goodness EAMom! I love that article--I actually was born in Hawaii and have spent some time there --

(though no Hawaiian blood.)

 

That article is a great find!

There has got to be some genetic predisposition to immune issues for our kids--and this article has SO many ties to PANDAS issues...and genetics.

 

I truly hope the science catches the reality soon--

 

Now...I think I will definitely move back to Hawaii--as it appears there are PANDAS treating doctors there!!!

 

Great post-- Thanks!

Edited July 4, 2010 by T.Mom

[dut]

Hi - we don't seem to be on the map yet.. I could've done something dumb..

[Iowadawn]

Buster-

I know of 5 cases right here in central Iowa. I think I'm the only one on the map right now.

 

Dawn

[Buster]

Hi, I added the other items from the survey to the map.

 

At present, I made the survey open and only plotted zip codes. I then shifted by a block any result that had the same zip code. I'm trying to find the right balance between anonymity and giving a useful picture.

 

Lots of things missing so far (age, zipcode now versus when symtpoms, siblings with similar conditions, multiple entries, ...).

 

After we get a viable initial cut, I'll ask for help on what the survey should have had in it

 

looks like I can group/change flags to those with PANDAS vs PITAND vs UNKNOWN.

 

See what you think,

 

Buster

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

Edited July 5, 2010 by Buster

[thereishope]

As always, you're doing a great job! You could just make it easier on yourself for the time being and just have one pin point per zip and on here give an overall how many cases per state. On the map, we cannot see what the zip is so you are keeping info confidential. I know we have people in UK, Canada, Japan, and elsewhere overseas that have written on this forum. I contacted some of the UK people. Didn't do Canada or elsewhere yet. As for the whole different colors for PANDAS and PITAND, my vote is have them remain grouped the same color for now. Otherwise, it will get tricky with the whole "My child started out as PANDAS, is now PITAND. Which catagory are they? Or I'm not sure if they are PITAND or PANDAS".

 

 

 

Hi, I added the other items from the survey to the map.

 

At present, I made the survey open and only plotted zip codes. I then shifted by a block any result that had the same zip code. I'm trying to find the right balance between anonymity and giving a useful picture.

 

Lots of things missing so far (age, zipcode now versus when symtpoms, siblings with similar conditions, multiple entries, ...).

 

After we get a viable initial cut, I'll ask for help on what the survey should have had in it

 

looks like I can group/change flags to those with PANDAS vs PITAND vs UNKNOWN.

 

See what you think,

 

Buster

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

Edited July 5, 2010 by Vickie

[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 -

[mkur]

I would like to see the year the child's symptoms began and the year the parents learned of pandas. There was no treatment available for the older children.

 

Thanks for all your input,

Mar

[Buster]

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