Jump to content
ACN Latitudes Forums

Recommended Posts

Completed survey, picking answers that seemed "best fit" where I wanted to check multiples but only could choose one. I think it's tough to come up with one survey that fits all PANDAS kids, since symptoms vary from exacerbation to exacerbation and many of us have tried so many treatments at so many points, with mixed results.

 

Very excited to complete this, though, and grateful to you for creating it, sir. Can't wait to see your results!!!

Link to post
Share on other sites
  • Replies 41
  • Created
  • Last Reply

Top Posters In This Topic

Maybe an option for other types of strep found (in sinuses, perianal, skin?). Also have read that doesn't raise ASO.

ADHD option for symptoms.

Nightmares, insomnia (night time disturbance and insomnia are our first signs of exacerbation coming!)

sexual preoccupation

taking a long time in bathroom

immunodeficiency’s - maybe a question with buttons for out of range on common IgG, IgA, IgM, subclasses

strep pneumoniae levels? We failed all but one on both of these test. I am SHOCKED that ds failed these as well as is low IgG and subclass low, because aside from pandas, is what I would consider very healthy kid. 2-4 cough/colds per year, a handful of ear infections when a toddler. He did have pneumonia when he was 6 though.Diana recently sent me email saying that this is VERY common in pandas kids. I thought we were one of the uncommon ones becasue ds had not asthma or history or frequent sinus or other infections. But when I got our test results I found we are STILL in that category.

 

Most people don't know that disgust itself can be an obsession ( we didn't until it happened to us) from what I heard from our psychiatrist, disgust is often the precursor to the behavior (like hand washing). In our case, ds has disgust - but not the behavior (other than yelling at me) that follows.

 

ASIDE:

I read something (somewhere online a long time ago, before diagnosis) written by a pandas parent. It said her son needed her near at every moment, but was disgusted by her at the same time. Simultaneously drawn to and repulsed by her. And I said...bingo! that us. Its hard to find information that will lead you in the right direction if your kid isn't doing the "normal" ocd behaviors, because you are looking for that specific behavior as a symptom. For example I was googling "looking into the sun" and "digusted by swallowing" Dr. K said he's seen all kinds of really odd stuff, and isn't particially concerned about what it is they are doing. But, it helps to see your child's behaviors among the listed. so the longer that lis, in my opinion, the better.

Link to post
Share on other sites

If you can do a search on your computer (under search program and files), search cookies. You'll see something about deleting temporary internet files and/or cookies. Click that and check mark delete cookies. All that does is delete browsing history and such. It will not hurt your computer and you should actually do this occassionally as a maintenance to make your computer go faster. You may have to re-enter saved passwords on websites.

 

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

:)

Edited by Vickie
Link to post
Share on other sites

Thank you everyone. We have some 60+ responses at this point.

 

 

I've posted initial results at: http://www.surveymonkey.com/sr.aspx?sm=HJlwfEnDARsXJ5S_2fSwCVBCIrdtKJdXjluik7YIID2Xo_3d

 

Great feedback on this forum and in the survey. I'll collect a few more samples today and then freeze the survey and post a request to retake it after I fix all the things wrong with this one. What is so amazing is having 60 people help edit -- great comments.

 

I'll post a new survey after I fix the questions. Please post additional comments here like:

"make question #11 have multiple choices"

or "please add sleep issues to the list of symptoms in question #..."

 

etc.

 

The more precise you can be on the edit, the better. I really appreciate the help. I'll post some of the results (faulty though they are) in a moment. It was pretty fascinating to read through.

 

Buster

Edited by Buster
Link to post
Share on other sites

Just looked at data. Facinating. There are so many possible relationships.

 

#4 - it would be interesting to see the # of kids that have more than 2,3,4..symptoms. Seems like our kids get soo many symptoms at same time. Data is there, is there way to get survey money to show that?

 

#16 - would be interesting to see if there are any correlations between these numbers,i.e. High antiLysoganglioside - higher cam K.

 

Also, if any correlation between a particular titer and any particular symptom.(depression and anti-dop, tics and Cam K....) May relate more to the question of primary symptoms rather than overall symptoms, becuase there is no quantification in the general sypmtom list, or correlation between# of symtoms, and elevated numbers. Probably needs to be done in a spreadsheet. I could try to do this if you want to send me raw data. May need bigger sample of cunningham test results..but maybe not.

Link to post
Share on other sites

I can actually run those cross correlations and will study that on the data already collected. Once I get the questions more "right" I'll rerun the survey (sorry to those of you who are tired of surveys) but frankly this is one of those unique moments where each survey is likely getting us closer. I tried to make this one simple to get right so the crosscorrelations would be meaningful, but it's still not catching the migratory pattern of symptoms. It's amazing how many of the scales think the symptoms are constants. This must have frustrated the heck out of Swedo as she tried to explain sawtooth to folks.

 

Buster

Link to post
Share on other sites

Hi Folks,

 

I've started a fresh survey at http://www.surveymon...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.surveymon...luik7YIID2Xo_3d

 

 

Buster

Link to post
Share on other sites

21. Not really sure whether titers were elevated or rising - first blood test was after 2 weeks of abx; later test was lower. I checked "elevated"

 

Thanks for doing this, Buster. I'll be checking those results frequently!

 

Kara

 

 

Link to post
Share on other sites

#8 - options are

2 months to 6 months

1 week to 1 month

 

Our worst times typically lasted 6 weeks. Can you modify to cover the period between 1 month and 2 months? e.g. 1 week to 1 month/Between 1 month to 6 months or 1 week to less than 2 months/2 months to 6 months?

 

#13 confuses me. Prednisone has been effective/no relapse for that episode but obviously didn't prevent a subsequent episode a few months later. ERP and CBT helped make the next episode less severe, but again didn't prevent another episode. Yet it feels wrong to say the improvements weren't "sustained". The benefits did last, but alone can't prevent another episode. Perhaps something like "effective but didn't end episode" or "effective/ended episode" -or- if the question is directed at seeing if the treatment was a "cure", then maybe CBT and ERP should be removed. I'm not sure if "no relapse" means no relapse ever or just no relapse within that episode. Also, we're too soon after IVIG to be able to say what the results were. Could there be a "waiting to see" response?

I answered in terms of one episode (e.g. prednisone "effective/no relapse" pex "effective/no relapse" because they ended that episode. But obviously, we're still fighting this battle and they weren't a "cure" for us.

 

#17 - would love an option of "pediatrician open to Pandas but uncomfortable treating" to underscore the need for guidelines for docs to follow. Mine didn't like winging it. So we do a lot of traveling to the specialists.

 

Thanks!!

Link to post
Share on other sites

This is amazing.

 

Can you clarify re: the Cunningham tests, if above normal refers to the range or the mean?

 

Also, wasn't sure how to deal with the symptom list. DS9 has primarily motor and vocal tics. He has some of the other, but they are so mild that if I didn't know to look for them (thanks to this group) I would either never see them or pass them off as minor quirks of childhood or personality. I guess I'll put them in as co-occurring.

 

And, as for the trigger - I think that his was a tooth extraction that occurred w/o prophylactic abx. Can you add/expand the trigger question?

Link to post
Share on other sites

For #12, What interventions have you tried, could you add a rating of "made symptoms worse," or "increased symptoms"?

That's a fantastic Idea... will do

 

Also, for that question, could you add an answer for current treatment, still waiting to see if it works, or something like that? We're still working our way back to 100% so it was tough to answer that question...

 

Thanks!

Link to post
Share on other sites

I looked at the inital results. What I am surprised about is that obsessions was such a high contender over compulsions-Ques #5.

 

This also explains why many didn;t worry until over 6 month of having symptoms present. Obsessions can be hidden more.Ques #6

 

I'm also curious to know for ques #11, what the write in responses were. I'm sure any follow up survery will give an inkling to what was written in.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...