TeamAidan

Few additional questions on this - : - Would monthly high dose IVIG (1.5g/kg) be warranted based on severity of case / symptoms and / or additional immune diagnoses? Our son, in addition to PANDAS, also has low serum IGG (CVID diagnoses). - Would doing a monthly high dose (1.5g/kg) do more harm than good - e.g. "Stir Up the Immune System"? - Dr. K indicates on his website that additional 1.5g/kg infusions can be given every 28 days. Now he seems to indicate that "waiting" and evaluating progress for 3 months is best. If warranted, additional infusions are given every 60 days thereafter. Is this the protocol that most are following? - At what point / how would one determine if IVIG has been a failure and that PEX should be considered? Any assistance and clarity is greatly appreciated!

Few things RE: inositol - don't believe method of action is similar to SSRI, but you may find indications otherwise in literature. Some of the research indicated that MULTI gram dosages were needed to reduce OCD behaviours - some dosages even approached 18 grams / day. DS has used inositol - no "wow" effect, but did not push dosage past 4 grams / day. Jarrow Formulas "Inositol Powder" can be trusted. Relatively inexpensive, good quality - dissolves easily in H20, tastes like sugar.... Cheers, Chris Good question. For the moment my answer is, "No, not yet." Our son is still on an actual SSRI, Luvox, basically a pharmaceutical "hangover" from those days before we turned to PANDAS and thought what we were dealing with was just pure OCD. So if there's any chance that inositol actually behaves in the brain like a synthetic SSRI, I don't want to combine the two and risk Serotonin Syndrome. I've been thinking about tapering down on the synthetic SSRI anyway, though, as 1) though it doesn't seem to be harming him, I'm not convinced it's actually helping either, and 2) the Murphy study and so many of the experiential responses here on this board tend to suggest the SSRI's might actually be contributing to some of his trouble, whether we know it or not.