July 28, 2010 at 9:57 pm

This is great information. I really appreciate it. I know he is not afraid of being “stuck”, but rather doesn’t really feel like the ivig helped him or made him worse. I remember though and I know it did help him. Part of his issue is that he also has sickle cell anemia. In and out of the hospital for the better part of his life already, only to catch pneumonia, an acute chest sickle cell crisis and GBS all in one day – was a bit of a shock for him. He had ivig in the hospital and 2x at home (the last time, on the last day – he had another crisis that landed him back in the hospital for a week). Maybe he is just scared that the ivig aggrevates the sickle cell (I don’t really believe that myself though). All of the reasons that you guys have the multiple treatments – those are the same reasons that I think DH should have them too. I am going to look up that website and the different variations – I guess we are just going to have to accept that this is CIPD (chronic – as in forever?) and not GBS (which is getting better slowly, but eventually mostly better?). Seven months into this – I think the progression then regression then sideways progression (if you know what I mean) is what is taking the worst toll. I really appreciate the advice!