Suspected CIDP…

April 28, 2008 at 11:02 am

It does sound like your grandson Josh does have CIDP. On a more positive note, it does sound like he was responding to the IVIG as well as the solumedrol (steroid) treatments. That means that he probably has the relapsing/remitting CIDP as opposed the the progressive form. The fact he is a teen is also good, as I have been reading this forum for almost 6 years now & young people seem to make better recoveries, many even going on to complete remissions.

Right now the most important thing for him is to get on a regular schedule of IVIG & maybe even solumedrol until his symptoms are under control. Initially it might be once a week, or every other week, or once a month; whatever it takes to get him back to normal. I am not opposed to solumedrol treatments, as I was on them for 21 months & needed them to give me back just enough to stay out of a nursing home. But I would use IVIG as a first choice of treatments, mostly because of all of the adverse side effects that Dawn mentioned.

I really feel for your grandson, I know that at first this illness seems like the worst possible illness in the world. But as time has gone by I realize that there are much worse things once can get & at least CIDP has various treatment options. BTW I got my IVIG & solumedrol infusions at home (once I got out of the hospitals after 4 months.) I actually looked forward to my home health care nurse coming, as we became good friends. My IVIG only took 2 hours 30 minutes, but I was getting it once a week back then. My solumedrol infusions took half an hour, got both on the same day. I wish him all the best of luck, things will get better for him, trust me…