Reply To: Help Please!

November 17, 2008 at 9:43 am

Hi Jessica,
I hope you are doing better this morning. Dr. Lewis is the one you asked the question of. He was the one that was talking about cmt to you and at the end came over and spoke with you. As Marjie did, I too liked him. A friend of mine has just returned from mayo w/her daughter, some of the same issues, constipation as well as urinary. Tests were done and they determined it is more likeley than not the cidp causing it. Will the doc give you ivig, or if I remember, you were frustrated with ivig in the past, would you consider prednisone or something else? I also was thinking about some of the other people that were at the symposium and had cidp as children. It seemed like for the most part, they seemed to go into a remmission for some time after or around puberty, for some years, some were even 10 years, one four. Anyway, they relapsed later and got back on ivig. If I remember, you stopped treatment a while ago and I was wondering if you progressed after or remained pretty stable till now. Regarding the relapse or so we assume, it would seem like now after a few years you are flaring up again, this seems to be a typical pattern for those who had childhood cidp. Good luck and be aggressive. My best wishes to you and your mom trying to figure this out.
Dawn Kevies mom