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are there any kids that did pex and then ivig in 28 days?


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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???

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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.

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