[Lisa V]

Karenish, I wish our doctor had told us what that hematologist told you. Ours started pushing for a second ATG after one month, saying that "we should be seeing some indication by now". That is absolutely untrue, and fortunately by that time I had contacted the AA&MDSIF and found enough other patients online who were all telling me 3 to 6 months, so we opted to hold off on retreatment. In Ken's case, we started to see a response at 10 weeks. When I talked to the doc later about the 3-6 month conventional wisdom, he said "Yes, I know, but if you give a second ATG within a month of the first one you can get a cummulative effect from the two treatments. If you wait any longer, you lose that." I can see now where he was coming from, but we didn't know that at the time, and one month is just too soon to second guess what's going to happen.

That's why forums such as this one are so important. If you listen only to what the doctor is telling you and don't do your own research, you may not be getting the whole picture or the reasoning behind it. They may have their own agenda or be applying principles from some other disorder they are more familiar with. AA is not only a rare disorder, it's not even a single disease-- more like a cluster of closely related disorders with similar symptoms. So what works for one person may not work for another, and one person's timetable may differ from another's. Once you get to know your own (or your child's or spouse's) patterns of response, you become your own best expert and advocate. Until then, however, it can be a frustrating and frightening experience. Waiting is hard, but it's the name of the game for AA. I didn't understand what they meant when they told me that at first. Now I do.

Hang in there!