Yes another survey

[Buster]

** Shifted discussion to http://www.latitudes.org/forums/index.php?showtopic=9319 **

 

Hi Folks,

 

I've started a fresh survey at http://www.surveymonkey.com/s/PANDASSurvey2

 

This survey has 26 questions and I think has incorporated all the great feedback from the prior survey. If you have more comments please add here or on the last question of the survey.

 

I tried to combine a lot of different content into one survey but didn't want to make it too long.

 

Summaries from August 1st survey are at:

http://www.surveymonkey.com/sr.aspx?sm=HJlwfEnDARsXJ5S_2fSwCVBCIrdtKJdXjluik7YIID2Xo_3d

 

 

Buster

Edited August 3, 2010 by Buster

[Phasmid]

I attempted to enter our data. I stopped, as many of the questions have corresponding responses that are not quite right for us. For example, we always did antibiotics for 30 days, never 10. There is no alternative there. This also occurs with other questions.

[JAG10]

You cannot check strep titers and mycoplasma IgG

[sf_mom]

We did a steroid burst just prior to CaM Kinase blood draw potentially impacting results.

[matis_mom]

I would have liked to checked more than one on question 11.

[thereishope]

Ques #11...I answered what was the main compulsion. MANY were present and the main ones varied with the exacerbations, but you can only give one answer.

 

After sending mhy answers, I thought of an interesting question. What other diagnosises has your child received (or entertained as a possibility) prior to the PANDAS diagnosis?

Edited August 1, 2010 by Vickie

[Kay]

Completed survey, #12 we put current prophylactic dose we chose effective no relapse continues to be this but wanted to mention this has not brought her to 100% we would say about 70%. She continues to stay at about 70% as long as she is on antibiotic. Does backslide going off.

[Suzan]

Wish I could submit one for each child as the answers are not all the same, espeically with major symptoms present.

 

susan

[thereishope]

If you delete your cookies on your computer, you can submit another one.

 

 

Wish I could submit one for each child as the answers are not all the same, espeically with major symptoms present.

 

susan

Edited August 1, 2010 by Vickie

[Kayanne]

Buster, Thank you so much for doing this !!!!

[Johnsmom]

I cant answer # 7. It doesnt go below age 2! I dont know when it all started. Possibly at age one with pink eye.

 

 

 

Hi Folks,

 

Can you take a short survey http://www.surveymonkey.com/s/PANDASsymptomsurvey

 

and reply here with any suggestions to make it better. It's got 20 questions (well 21 if you include the question about what's missing).

 

I tried to combine a lot of different content into one survey but didn't want to make it too long.

 

Buster

[Suzan]

If you delete your cookies on your computer, you can submit another one.

 

 

Wish I could submit one for each child as the answers are not all the same, espeically with major symptoms present.

 

susan

 

That worked! Thanks, I got both girls there...

 

Thanks Buster!

 

Susan

[becjonz]

You cannot check strep titers and mycoplasma IgG

I ran into this same problem.

[philamom]

Thanks Buster-

On #11 Would've liked to put down more compulsions.

On #12 We did two steroid bursts nine months apart (one effective, the other not).

On #15 We didn't learn of PANDAS until 3 months after onset and was told not to bother confirming GABHS. We did however, get resolution of symptoms because child was being treated for bacterial infections with abx. Episode 2 we did have confirmation with throat culture.

On #17 Was unable to select two answers.

Also did prednisone burst right before Cam Kinase test.

[dut]

ok, so this question probably means I shouldn't be trusted with a computer but how do you do the cookies thing?