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Showing results for tags 'pans and cvid'.
Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just
We recently saw Infectious Disease and Dr. B. ID says to do LD IVIG to help the CVID which will decrease infections therefore less flares. Dr. B says HD IVIG for the "PANS Protocol" and the LD will put them in a flare. Experiences? Thanks.