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Found 2 results

  1. 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
  2. anyone know of any materials that defiine IVIG protocols for PANS vs: lyme vs: immune deficiency? from what I have seen doing low dose ivig could makef PANS symptoms worse, that PANS needs high dose IVIG? those that have done IVIG, would you mind sharing the product and doseage/protocol the docs used? when my son did it 10 years ago with dr gupta he premedicated with benedryl and ibuprophen and for 7 days after. seemed to help my son a lot , but now those two drugs make him psychotic for some reason. deborah
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