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My son had AA before his transplant, but with all the reading that I've done and continue to do about bone marrow failure diseases and PNH, if it were my son, I'd very seriously consider transplant even with his seizure disorder. His extremely high LDH indicates that he is having a lot of hemolysis. Plus the Soliris only addresses the PNH, not the MDS which is a pre-leukemic disease.
What are your son's other counts like (wbc, rbc, platelets, absolute neutrophils)?
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.
www.caringbridge.org/visit/evanmacneil
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