Hi SAA Mom,
I can understand your exasperation in trying to decide the best possible treatment for your son.
I just thought I would throw in my two cents...Don't rush to transplant if you don't have to. If your son gets his AA under control and his PNH is stable or improving, why not wait for more advances in medicine before taking this gamble. I was 42 years old at the time of my diagnosis. 40 is another magical number for transplant statistics. I remember agonizing over the transplant decision because I had a sibling match and was only getting older. I'm so glad that I chose not to, even though I am not "cured". I'm not sure where I'd be today if I had gone the other route.
It's been my experience that transplant doctors are biased towards transplants. If you are more confused than ever, consult with another doctor that specializes in PNH (these are even rarer than MDS/AA doctors!)
Here is a recent article that describes how PNH clone size can decrease after IST:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895030/
I'd also recommending reviewing the presentations on PNH and AA at the AA&MDSIF on-line learning center, if you haven't already done so. They usually are excellent, and knowledge is power!
https://live.blueskybroadcast.com/bs...?Client=680927
Hopefully you will see that rise in your son's counts soon!