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Hey Towncarlady,
My son was diagnosed with SAA at the age of 3 (he is 4 now). After almost a year of transfusions they started him on Exjade. He had pretty severe reactions to that drug - rashes and fevers, one that landed us in the hospital. In the end, they put him on Desferral at home on a pump 2x a week for 8 hours each dose. We were trying to keep his numbers from getting higher before transplant. I have read Exjade works well, just some have reactions to it - and unfortunately my son was in those numbers.
Now, just recently on the other side of transplant, they will be checking his ferritin levels again next week. I know he will be very high as he was high when we went in and he has gotten several red transfusions so far since transplant. Red cells haven't kicked in yet - I understand sometimes they take a while.
Hope this helps.
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Mother of Ethan, diagnosed with SAA at age 3-1/2 Dec. 2008; Treated with ATG(h) Dec 2008 and ongoing Cyclosporine. MUD BMT 11/10/2009, 10/10 match
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