anonymous0121 Posted November 13, 2013 Report Share Posted November 13, 2013 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 Link to comment Share on other sites More sharing options...
mdmom Posted November 13, 2013 Report Share Posted November 13, 2013 My DS16 gets HD-IVIG monthly at 1.7g/kg. The IVIG dose used in the Yale/NIMH study is 2.0g/kg. (grams of medicine per kilogram of body weight). He has done well with this dose. It is managing both his PANS and immune deficiency. Our integrative doctor does not prescribe steroids or Benadryl, which is unusual. Instead the doc orders IV pre-hydration (1 hour before IVIG) with 400mg Magnesium Sulfate/25g Vitamin C and we dose ibuprofen 600mg BID before, during and for 2 days after IVIG. He has done very well with this protocol with no side effects. Link to comment Share on other sites More sharing options...
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