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Old Thu Jan 31, 2013, 09:08 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Sfdcoach View Post
Hi Chirley as per our last biopsy on 1/15/13 no chromo abnormalities or mds. I cannot find another toddler with both diagnosis at this time. We are currently trying to configure our next move before we head to a bmt. We feel all of his other diagnosis need to be throughly investigated. His ATG treatment was now 9 months ago. Being that we have had issues with medical facilities being able to accommodate with a spectrum understanding we are looking for a proper facility.
Have you contacted the NIH? They like rare cases.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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