Hi Marilin,
I took the extreme measure of e-mailing you directly in addition to posting on the forum, because I feel VERY STRONGLY that your children are misdiagnosed. Giving how rare AA is, it is impossible to have 2 kids afflicted in the family unless something else is happening. I'm surprised that your doctor did not question this. If he didn't, he's a bad doctor, and I'm not mincing words here! (plus, he said to taper over 3 mo, which is clearly inadequate!!!) I would advice for a second opinion ASAP, preferably to a doctor that treats AA in particular, even if it is far away from where you live.
The first thing that comes to mind is something genetic, in particular Fanconi anemia. Have your sons been tested for it? It is a special blood test, takes a while to get the results back, but you MUST do it, because the treatment route is quite different than AA, and actually the ATG is contraindicated in Fanconi.
As Marlene mentioned, another genetically related possibility is short telomeres, and in this case it might be AA, but it is clearly not autoimmune, so the ATG might work or not. Or it might work for a while, and then a relapse happens. I'm not trying to be negative, but with such young children, you must understand all the aspects of this disease, so you can decide accordingly. Maybe a transplant might be a better option?
Also, even if is not very probable, it is not impossible to have some environmental exposure, although this would be hard to prove (for example, higher incidence of leukemia in the area).
For starters, I would again emphasize the need to get a second opinion ASAP!!!!
Sandra
PS You can also check the other AA forum
http://aplasticcentral.com/test/toas...n=topics&fid=2