frequency of IV IgG
Hello, I just wanted to make a comment on the frequency of the IV IgG. It may be the case that Kevie does not show symptoms until four months after IV IgG, but symptoms are the tip of the iceberg. I would guess that the goal is to suppress production of his own (auto-) antibodies and this is done best with monthly IV IgG. This would be with the goal to minimize present and future damage. Doing IV IgG every four months may work to control symptoms, but you also want to control the underlying process as well as possible in order to minimize long term damage that accumulates when it is not controlled. I fully understand that in this illness the “exact” best schedule and timing of administration of IV IgG are controversial and very, very likely are dependent on the disease status in each individual patient. I have worked with children with other autoimmune processes and immune mediated processes (many easier to detect than GBS/CIDP) and the best treatment is suppression of the immune response and gradual spacing of the therapy that works so that the process does not “flair” with this spacing.
It may help Kevie to deal with the impact that this will have on his life if he is able to understand that it is directed toward making the submerged part of the iceberg be safer.
With hope for cure of these illlnesses.