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Does PEX work? Psych Drugs?

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My last sleep deprived post today, I promise!!


I went to see Dr. Hollander today (a psychiatrist). I wanted to pick his brain regarding whether the Luvox could be causing all the havoc that we have seen lately with DS15. He didnt think so because we arent even at "treatment dose" yet (we're at 100mg CR).


I asked whether he thought DS would benefit from trying IVIG again or doing PEX. He said that based on the fact that the infections (and co-infections) are going down across the board, the reason DS is stuck is because he is not doing enough therapy (not because of infections/inflammation) and we should consider (very seriously) sending him to Rogers in Wisconsin.


He does not believe that IVIG or PEX would help since "the immune system is covered"


What I learned on this forum is that getting the infections/coinfections under control is what makes the immune modulation therapies more effective.


I still believe that part of PANS/PANDAS is that the OCD/ticcing is minimized when the patient is more "cured" through combination antibiotics/anti-virals.


When I mentioned trying to see the team that helped Susannah Cahalan at NYU, he responded that he was just approved with his own test that will show anti NMDA receptors, dopamine carriers and more. He said that it should be ready in a week or so and he will test DS too (free, part of his study). I am still trying to get through the door at NYU.


We are still waiting on the Cunnigham results too.


So my question is am I delusional in thinking we can still cure this? Am I just in a bad place because a psych doctor pushed pysh meds and therapy rather than IVIG/PEX?


It really seems as though anyone who did PEX saw some sort of result even if the flare returned after a while. DS could really use a break, even if it will only make going to see an LLMD and get therapy (at USF) more like a reality.







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He does not believe that IVIG or PEX would help since "the immune system is covered"


What exactly does he mean when he says "the immune system is covered". How is it "covered?"


This is how Dr. Latimer explained things at the 2012 IOCDF conference:

"Treat like asthma. Treat infection/get rid of source in environment, then treat the autoimmune response."


So in other words, PANDAS usually (often) isn't as simple as "getting rid of the infection" (otherwise there would NEVER be an indication for IVIG and/or PEX) Yes, there are some kids (esp. the acute first onset cases) that will "self-correct" once the infection is eliminated. Others need more, steroids (which you don't want to do if there is a chance of Lyme) and is of short term benefit, IVIG, PEX...

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My ds18 went through PEX and gained absolutely nothing from it. Huge disappointment for us. He is 8 months out, and no improvement. Now, I can say that you need to be very careful with the psych drugs. Ds handles them well, but dd does not. Even small doses can throw her.


Good luck sorting things out. It is so hard.

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In the first Swedo IVIG / PEX trial PEX was actually better than IVIG.


And here's a trial of 4 adult men (pandas since childhood). PEX helped but they were not put on prophylactive antibiotics so the next time they got sick, they relapsed.




1tiredmama has your son been checked for Lyme and other tick borne diseases? You might want to revisit that (Lyme culture test?) as Lyme tests are notoriously unreliable. For some reason when you said PEX didn't work for you that is what popped into my head.


T. Anna

You might want to point out to you psych that there are actually no studies demonstrating efficacy of CBT and/or psych drugs in PANDAS kids (only studies in kids with garden variety OCD). On the other hand, there ARE studies showing that PEX/IVIG helps.

Edited by EAMom
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