Quote:
Originally Posted by evansmom
Hi there,
Sorry to hear that your son is having to deal with this awful disease. My son was diagnosed with AA in November 2007 at the age of 10. He was a non-responder to ATG and went on to have a successful unrelated BMT in June 2008. We were very lucky as we went from diagnosis to full recovery in 13-14 months. Evan's complete journal start to finish is linked below. Feel free to visit. This disease is successfully conquered all of the time, keep the faith!
My son would get bone/joint pain in the months after his ATG treatment, but I first attributed that to serum sickness, despite being on prednisone. When it continued, I attributed it to marrow stimulation, especially because he was on G-CSF injections to artificially raise his ANC.
You are right not to give your son any extra iron at this time. He'll be getting more than his body can use through the red cell transfusions.
You have found extended family here. This forum was one of my life lines during our time with AA.
Best wishes for complete return of health to your boy,
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You've definitely injected me with some hope! I don't want Jacob to have a BMT if it can be avoided but it's nice to know it can be successful with a non-relative donor. When you say your son didn't respond to ATG, what does that mean? Did his counts go up any? Was he still needing weekly transfusion? Why didn't they do it a second time? What hospital did you go to? If Jacob can end up healthy like your son Evan I will be ecstatic! I just have to hang in there a little while longer. Jacob has weathered this illness well. He rarely complains and he doesn't mind being stuck at home. I have serious "cabin fever" but know it will all be worth it once he's back to his old "normal". Thanks a lot!!