Fixit Posted August 18, 2010 Report Share Posted August 18, 2010 Thats basicly this question... on Doc ks site he talks about pex followed by ivig 28 days later.. Do we know of anyone who's done that treatment??? a panda friend who doesn't post???? and how did doc k come up with that??? did he do that with several kids...or is it just a theory????in some ways i get it...i think and 28 days...is that from the end of pex or from the begining??? Link to comment Share on other sites More sharing options...
RNmom Posted August 22, 2010 Report Share Posted August 22, 2010 Oh boy, is is the question I am struggling with now. Last June, a PANDAS friend had their ds follow PEX with IVIG because he got strep three weeks after the PEX. He was on Augmentin but at a low dose. The strep was virulent and needed a different antibiotic (Ceftin). He is currently maintained on Zithromax and continuing with IVIG every 8 weeks. This case makes the point that PEX is great for clearing out the anti-neuronal antibodies but it cannot prevent recurrences. My ds14 had PEX at the end of July. We are keeping him 100% home bound until his immune system rebuilds itself. He is not going back to school in the fall. It is a radical decision but, as everyone knows, PANDAS is an extreme disease. Not to mention that it was so difficult to access PEX that I do not want to be casual about follow up care. The big question for us is whether or not we also have IVIG. We will make a decision in September when we follow up with Dr. L. Right now, she wants us to have him work with a therapist who treats OCD and post traumatic stress. She says a lot of her older PANDAS patients have a post traumatic stress response to the illness as well as the hospital experience. It makes it difficult to determine what symptoms are residual OCD and what are a reaction to the illness itself. My personal feeling is that my ds will need therapy and IVIG. Are there others out there going through this decision making process? I would really appreciate feedback. Link to comment Share on other sites More sharing options...
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