I think we have found an ivig solution…

    • April 3, 2009 at 9:56 pm

      sorry no info

    • Anonymous
      April 3, 2009 at 10:50 pm

      Dawn that is great news ! Did you ask for that or did the dr switch it ?

      We’ll pray for that remission…he sure is on the right track !

      great news !

    • Anonymous
      April 4, 2009 at 5:29 am

      We are all so happy for Kevie and you that this infusion gave no terrible headaches, fever/chills, etc. That is geat.
      i have two tiny suggestions. First, I think Kevie is still getting the infusions over five days???? and this is hard for school and that is part of the reason that you want to decrease to one day every two weeks. My tiny concern with this is that it is changing dose and schedule both on something that is working and FINALLY is being tolerated okay. My guess is that, in the long run, it might help everyone, especially Kevie to have this go well for a few months and since it is coming up summer, so maybe think about not changing something else for another couple of months–let it go well and him get his “fight” back. Then try another change. This will still be done before the next school year. It is just if you change something else soon and he does not feel as well, it will harder to know if there was a difference in brands or doses or schedules. And, yes, all immunoglobulins “should” be the same, but in reality, they aren’t–you just saw that regarding reactions and people report differences regarding effectiveness.

      Second, if you do try one day every two weeks, make sure that the first smaller dose is two weeks after the previous full monthly dose so that the new equilibrium in Kevie’s body is achieved by coming down rather than starting low and building up. the latter would happen if the smaller, more frequent doses were started a month later.

      I should not write in the middle of the night. I probably am not making sense!!
      WithHope for a cure of these diseases

    • April 4, 2009 at 2:55 pm

      sorry no info

    • Anonymous
      April 4, 2009 at 10:52 pm

      Dawn, I and all the rest of us here are proud of you. You are always thinking and sharing and advocating for your sons. It has been a tough winter, but I think the improvements that Kevie has had (consistently!) recently are extremely positive and think the immunoglobulin going better is a very positive sign of a turn in luck.