Dawn Kevies Mom from Beth

    • Anonymous
      May 19, 2008 at 6:36 pm

      Thanks for the kinds words. You always make me feel better. I feel ashamed for all of my griping when I think of what your child goes through.
      MD said it takes four to six months for Cellcept to work. I have been on it for seven months.
      I may need to go back on it in the future. Hope not, as it is really very expensive.
      MD says he has not been able to really stabize me and so we are going to cut out a few things and see what just the phresis and steriods do and then may have to start from beginning again. Guess I’m not following the normal course of the disease.
      Onward and Upward, only places left to go.

    • May 19, 2008 at 8:14 pm

      Hey Beth,
      Everyone is entitled to gripe! I don’t even have this cruddy disease and I gripe to you guys all the time! Anyway, since you are doing pp, I think the cell cept and what ever else (steroids) might get filtered out (what ever is taken before) After is ok until the next pp. I am pretty sure, not positive. Since you don’t bode well with the steroids, not to mention having it and then having it filtered out, you might want to ask the doc if it is even going to do any good. Who knows, my thought could be totally off, just thought I would throw it out there. Well, good luck with the new direction, and I am confident sooner rather than later they are going to find something to help our Beth!!!!
      Dawn kevies mom

    • May 19, 2008 at 8:21 pm

      I tried to edit so I could add to the post but as you can see, it didn’t work. Anyway, there is a girl a few towns away from me that tried everything for her cidp, ivig, steroids,pp,cell cept, imuron. She had a stem cell transplant 4 years ago at northwestern University. She was the first US recipient for cidp. Try googling a random search if you are interented. I think her name was Jenn, or Jenn’s story. If you can’t find anything, I will look for her # if you want to talk to her. She is really nice and willing to answer questions.

    • Anonymous
      May 20, 2008 at 3:33 pm

      Thanks for the info. Did not know that is a prodcedure they did for this disease.
      Hope your day is going well.

    • Anonymous
      May 20, 2008 at 6:01 pm

      go to mih.gov or is it .org? anyway, the national institutes of health has a link tio investigational studies. i applied to northwestern for the stem cell thing but never heard back. . .