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Old Mon Jan 19, 2009, 09:48 PM
klps klps is offline
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Join Date: Jan 2009
Location: Charlotte, North Carolina, United States
Posts: 1
2nd opinion a must

I have read all the responses here. I would totally agree with getting another opinion.
I have been successfully (so far) treated with ATG through Dr. Young and the NIH. Part of the study I took part in experimented with the length of the cyclosporine taper. I think you may have gotten a shorter taper from your doctor because that's just what they do right now. Until the NIH, or another medical institution, proves differently, they won't change that.
I tapered over about a year or so. I reduced my dose every 3 months by 25%. That has worked in my case, but you'll need to make sure it will work in your case.

As far as seeking treatment at the NIH - While it has been very successful for me, I definatly had to be my own advocate and fight for myself. It can be a very overwhelming place. Especially with children, you will have to be present at all times and fight for your child. It will be intense, but potentially rewarding.

Regarding his desire to play football, I'm with some of the other posts here. I would certainly allow him to practice with the team, but full contact should be off limits for now. I would think he will be exhausted with just practice and could potentially get sicker if he pushes himself. He may require more transfusions if he pushes it. Transfusions will not work forever, and in my opinion (which doesn't count for much) I wouldn't take the transfusions for granted. Meaning, don't let him get hit in football just because he got a transfusion of platelets that day. Don't "waste" the platelets!

I'm sorry if this sounds judgemental, but it's just my opinion. You will know in your heart what will work best for your sons. May God be with you and your family. I pray that he provides you with tremendous strength and stamina to get through this.
__________________
Kim, wife; mother of Kayla age 6; diagnosed with Severe AA 2005; treated with horse ATG in 2006; finished with cyclosporine in 2007.
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