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Old Fri May 7, 2010, 06:00 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Becca,

I'm as puzzled as you that your younger son wasn't tested as a potential transplant donor for his brother. Transplants have risks but a successful transplant is curative and the long-term outlook is especially important for children since they have practically their whole lives ahead of them. Both ATG and transplants are statistically successful AA treatments for children so you want to make sure that these choices are weighed.

I wouldn't call platelets of 35,000 "asymptomatic." It's good to appreciate that your son can live a mostly normal life, and your family could probably manage with temporarily curtailing some of his physical activity, but until his counts are normal or very close to normal I doubt you'll feel you've reached your long-term goal.

It's hard for us as patients and caregivers, no matter how well-meaning, to second-guess doctors who know the details of each case. There are really two questions here: why did he get ATG in the first place without checking for a sibling match, and what is the best course of action now? The answer to the first question probably needs to come from the doctors who made the decision. I'd ask them straight-out: what factors determined their choice between transplant and ATG? Perhaps they had good reasons; it's part of their job to explain them. If you can't have that kind of conversation with your sons doctors, he may not have the right medical team.

The second question is more important, because it determines where you go from here, and it should be answered by a doctor you trust. You didn't mention what city you are in (there are a few Childrens Hospitals) but I think you should get a second opinion from doctors at a treatment center known for expertise with pediatric aplastic anemia. This will provide you with a fresh look at the treatment choices and give you confidence with your decisions as well.
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