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momofthree

Questions for those of you who did IVIG

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We are finally going to be getting IVIG next week with Dr. L. I am wondering how long you kept your child out of school after the infusion, and if so for how long. I am still waiting to hear back from dr.'s office with regards to some questions about the upcoming procedure. Also, within even your own household, did you keep them somewhat secluded? I am worried with our families' strep and illness history that my other 2 children might pass something along. I know we can not keep them in a bubble, but just wondering how you all went about it. And any suggestions regarding first IVIG are appreciated, thanks

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there were posts on this forum in the past describing ivig pre and post -- you may want to do a search. since IVIG is not P/p specific, you may also want to do a general online search.

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We did IVIG for our two kids 12/2014 with Dr L. The biggest issue, BTW, is that the IV causes frequent urination and the bathroom is not easy to get to. The headaches came as expected, my daughter's was quite bad.

 

All of our PANDAS friends have gone through IVIG, and many were doing much better before coming down with some infection in the 4 month window afterwards. Consequently, we have tried keeping our kids isolated, except for grandparents. My kids are 6 & 7, and are not careful in the least. Unfortunately the grandparents were not as careful and have pulled down two infections and passed them on. (My mom is on a post-cancer med that lowers immunity.) She prescribed steroids for use during flares and that has helped.

Edited by dasu

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