Quote:
Originally Posted by destiny09
We were advised to stay away from this treatment from our doctors, due to the fact that the national instutue of health shut down their study due to a high death rate.... We to have a 12year old that is diagnosed from severe aplastic anemia. She didn't respond to ATG she is still 95% production lost at her cellural level. She is recieving one red cell and two platetlet tranfusions a week. She has had over 112 transfusions since may. The childrens hospital wants to do an emergency bone marrow transplant on her, we are currently waiting for the bone marrow center to find a match as two donars haven't panned out.
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Hi Destiny,
I'm so sorry about your daughter. I certainly hope she starts producing more cells via some treatment. She certainly needs some relief to those transfusions every week. When I went to Johns Hopkins I was not transfusion dependent and was diagnosed with mAA. I went off cyclosporin and within 3 months was not producing many cells and went toward sAA when my platelets were 4,000 or so. I went thru ATG locally and spent 12 days in the hospital and still have side effects from the treatment. I now require 2 units of platelets weekly but about 3-4 weeks between packed red blood cells. I won't know if the ATG helped for 4 or 6 months, I'm told. I am 68 years old so my response is a lot different from your daughter's, I would think. Please let us know what is happening. I hope a donor will work out. I know you life and hers is in tatters with the waiting, but I really think something will turn around for you.
Much love and support,
Flyguy