Does PEX only work once?

[Kayanne]

PEX helped rid her daughter of debilitating OCD...she didn't have tics. The anxiety sticking is Dr. K's observation............doesn't mean it is true for everyone. However, in many of the cases of PANDAS kids who are now older...even adults....many deal with anxiety issues. Dr K explained the opposite to me (again, doesn't mean it is the gospel)....that the out of control OCD, tics, rages, intrusive thoughts that the kids experience, and don't know why or why they can't control it, is the fuel behind the anxiety.

 

DCmom.....all I know is that is what Swedo told Janice and it was true in her case. The PEX only had effect once. That would lead me to believe she (Swedo) had scientific reason to believe it. That would be a good question to have asked Swedo in the recent coffee talk. I can contact Janice and see if I can get more info. about it. She has always been so nice and helpful.

 

Does anyone have her (Janice's) web-site bookmarked or anything? I know many of you may not of ever had the chance to see it. I found it years ago but can't find it now. Bummer...her daughter has to be about 18 or so now...I'd love to chat with her and see how things have been going. Let me know if any of you can find it or have contact info.

thanks!

 

Here is her website:

 

http://www.e-pandas.com/index.html

 

Searching the internet for almost a month after our ped told us about PANDAS, I was only ever able to find Janice's site, and the NIMH site. I didn't find this site until I finally googled "short term memory loss and strep" and a post came up. I thank God that I found this forum.

[P_Mom]

PEX helped rid her daughter of debilitating OCD...she didn't have tics. The anxiety sticking is Dr. K's observation............doesn't mean it is true for everyone. However, in many of the cases of PANDAS kids who are now older...even adults....many deal with anxiety issues. Dr K explained the opposite to me (again, doesn't mean it is the gospel)....that the out of control OCD, tics, rages, intrusive thoughts that the kids experience, and don't know why or why they can't control it, is the fuel behind the anxiety.

 

DCmom.....all I know is that is what Swedo told Janice and it was true in her case. The PEX only had effect once. That would lead me to believe she (Swedo) had scientific reason to believe it. That would be a good question to have asked Swedo in the recent coffee talk. I can contact Janice and see if I can get more info. about it. She has always been so nice and helpful.

 

Does anyone have her (Janice's) web-site bookmarked or anything? I know many of you may not of ever had the chance to see it. I found it years ago but can't find it now. Bummer...her daughter has to be about 18 or so now...I'd love to chat with her and see how things have been going. Let me know if any of you can find it or have contact info.

thanks!

 

Here is her website:

 

http://www.e-pandas.com/index.html

 

Searching the internet for almost a month after our ped told us about PANDAS, I was only ever able to find Janice's site, and the NIMH site. I didn't find this site until I finally googled "short term memory loss and strep" and a post came up. I thank God that I found this forum.

 

 

 

 

 

Thank you Kayanne!

Edited February 13, 2011 by P.Mom

[P_Mom]

From Janice Z. regarding PEX and her daughter who was in the original Swedo study.

 

Hi Kelly!

 

Good to hear from you. Hope your boys are well.

 

Yes, you are remembering correctly. Now, if I am remembering correctly, I was told that the second round of plasmapheresis would only have a 10-15% rate of efficacy, because the autoimmune process had already been set into motion. Meaning, I am assuming, the immune memory factor wherein the system recreates the defected autoantibodies as quickly as they are removed from circulation by PEX. That is why they say the treatment is "novel" and is only effective at the initial onset of PANDAS symptoms. However, since that time, I believe differing opinions exist about IVIG regarding long term immunological effects. It may prove advantageous for long term recovery results.

 

My daughter is well. She has not ever had strep again since her bout with PANDAS. She is in college and is on the Dean's List with a 4.0 and was awarded an academic scholarship. She also received a couple of immunizations for her stay in college dorms and did not have any problems.

 

Kelly, I still hold by breath regarding PANDAS. I continue to actively research and have made some interesting connections in my mind, albeit I am a lay person, about this process. Take care.

 

Janice