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Hi, Henry's Mom.
Welcome to Marrowforums and sorry you have to be here. It sounds like you are already well-versed in how to communicate with doctors and navigate hospitals, labs, therapists, social workers etc. Those skills will serve you well as you deal with the challenges of Henry's treatment for aplastic anemia.
It's fascinating that you say Henry's speech/communication picked up after he was transfused. Since hemoglobin carries oxygen to the body and the brain, it seems to me that as his counts were declining, his skills were probably being negatively affected. With a fresh batch of red cells in there, his brain perked right up. You should note this to his doctor because it may affect the threshold at which Henry's hemoglobin should be maintained. Although everyone is different, adults are typically transfused when their red count goes below 8.0. The minimum for a child may be different and any special sensitivity Henry may have to low counts should be considered.
As you will see in our discussions, ATG (anti-thymoctye globulin) is typically the first treatment for AA even when a patient has a matched sibling donor for a possible bone marrow transplant. Have you discussed this with Henry's doctor?
Let us know what questions you have. We are here to help.
Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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