Guest guest Posted June 12, 2006 Report Posted June 12, 2006 Kim - Welcome to the group. I am glad to see that is being followed and will get proper treatment shortly. There is an " art " to making IVIG (especially the first ones) comfortable so feel free to touch base with us before the first treatment. = ) Barbie - Welcome back! If a nurse, and friend of an immuno, has challenges with getting the right treatment, I can see why it takes 8 years (or longer) for kids to be properly diagnosed. Your son is blessed to have you. Are you involved with the IDF? I can see you being a great patient advocate. With regard to MS, there is some evidence that IVIG improves outcomes -- perhaps you have already explored this... - I thought of you during an immuno conference last weekend. The director of immuno said that there can be defects in 4 major systems: humoral (B cell), cellular (T cell), phagocyte, or complement. It is possible to have a quantitative IgG within normal limits but still have function issues (shooting blanks) or a problem in another part of the immune system -- thus affecting overall function. Ultimately, the whole system ( " big picture " ) needs to be assessed when one is so sick for so long. Hope your struggles with finding answers ends soon. The " not knowing " phase, without docs being responsive, is the absolute worst. Hope you are okay. Marlo - I hope that Chelsea is tolerating her meds and feels better soon. There will be plenty of opportunities to get together when everyone is well. Take care. mom to CVIDer Quote
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