Is IVIG study just reinforcing that if titers/strep not involved=not p

[eljomom]

I've read through the study a few times, and it frustrates me to no end that they are again limiting this to "documented strep." From what I know, there are many of us who either don't know if strep started the whole thing, because we weren't tested for it, or who are reacting to other things besides strep. It seems like it's just one more way for docs to be able to say "well, if you don't have strep as a trigger, then it's not pandas." Well, maybe it's not pandas, but pandas and pitand have the same symptoms and immune response, right?

 

I also wonder about the definition that exacerbation is within 24-48 hours, as again, there seem to be many of us who started with milder stuff that we were able to say was "quirks", etc.....and who's exacerbations occurred over more like a week or so.

 

Also, wondering what exactly the following things they are measuring are (or how they are measuring them):

 

1. Reduction of titers of cross-reactive antibodies (Abs)

 

2. Resolution of basal ganglia inflammation (as measured by pre-/post-changes in MRI volumetric scans and inflammatory sequences)

 

3. Normalization of selected serum and CSF cytokines

[norcalmom]

As mom of a pitands kid - yeah, its frustrating, but nesessary. The study is to document an infection and temporally link pandas onset to it. They have to prove the infection to prove the hypothosis. The good news is...doctors can't prove your kid didn't have a strep infection. And, Swedo has said that the first few exacerbations are usually several weeks after the infection...its only after the kid has had it for a while that you see the close (24hour) relationship.

So, I think they first need to prove pandas, then they can prove pitands.

 

# 1) I think this is probably cunninghma's tests

#2) just means they are doing MRIs on the kids before and a after the IVIG treatments to see if volumes in the basil ganglia change

#3) CSF is cerebral spinal fluid, which means the kids in the study will have to get spinal taps (I think). Yikes. Selected serum...may again be referring to cunninghams's test or other blood tests...many of our kids have immune def. that are helped out buy the ivig , maybe thats what this is.

[eljomom]

thanks norcalmom! i guess maybe it's a blessing that we wouldn't qualify due to no "documented strep", since i don't think i would want dd to go through it all to only get saline, and then have to go through it again. i am still sitting on the fence with ivig anyway...

[thereishope]

I'm actually a little surprised that this is all happening in this sequence. I really thought the white paper and the name change would come before the study. I was shocked to see the word PANDAS on the study.

 

I wonder if part could also be they want all the kids in the study to have the same trigger (strep)? So they're comparing apples to apples.

 

 

I've read through the study a few times, and it frustrates me to no end that they are again limiting this to "documented strep." From what I know, there are many of us who either don't know if strep started the whole thing, because we weren't tested for it, or who are reacting to other things besides strep. It seems like it's just one more way for docs to be able to say "well, if you don't have strep as a trigger, then it's not pandas." Well, maybe it's not pandas, but pandas and pitand have the same symptoms and immune response, right?

 

I also wonder about the definition that exacerbation is within 24-48 hours, as again, there seem to be many of us who started with milder stuff that we were able to say was "quirks", etc.....and who's exacerbations occurred over more like a week or so.

 

Also, wondering what exactly the following things they are measuring are (or how they are measuring them):

 

1. Reduction of titers of cross-reactive antibodies (Abs)

 

2. Resolution of basal ganglia inflammation (as measured by pre-/post-changes in MRI volumetric scans and inflammatory sequences)

 

3. Normalization of selected serum and CSF cytokines

Edited January 26, 2011 by Vickie