View Single Post
  #1  
Old Thu Aug 1, 2013, 07:33 PM
topcow topcow is offline
Member
 
Join Date: Jul 2013
Location: McPherson, KS U.S.
Posts: 8
Question Son with PNH & MDS

Hello,

My 15 yr old son was diagnosed with MDS in 2011 and PNH just a few weeks ago. He suffered from viral encephalitis in 2004, and as a consequence of that he has seizures also. He has also had pneumonia a few times, and my question is about Soliris. One doctor we have seen has recommended it, and told us that most docs agree that they don't do BMT on a patient until they have tried Soliris. After reading everything I can find about BMT, PNH, and Soliris, I really do NOT want him to try the drug. Could some of you who have been on it let me know if I am being unreasonable about this?

My worry is that since he would have to have a port for Soliris infusions (his veins are shot) that it could get infected, or that the Soliris will make him more likely to get other infections. Infections are already something we deal with, and when he gets even a small one he starts having seizures. Any thoughts?
Reply With Quote