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Old Fri May 7, 2010, 12:17 AM
Becca Becca is offline
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Join Date: Apr 2009
Location: St. Louis, Missouri
Posts: 1
Question Sibling was not tested for pediatric AA patient

Has anyone ever heard of a case that went right to immunosuppressive treatment without checking the sibling for a marrow match?

Hello, my son was diagnosed with severe AA in February 2009. His BM biopsy showed cellularity less than 10%, and platelets less than 4,000 when we checked into Childrens Hospital for unexplained bruising. His ANC was 880. We moved fairly quickly into immunosuppressive treatment with ATG and then cyclosporine. He became transfusion independent within four months and is being treated with cyclosporine currently. His counts have been slow to respond and his platelets hover at 35,000. Since diagnosis, he hasn't gotten sick (infection, fever, even sniffles) and other than his port and having to get regular bloodwork and take pills daily, he lives a normal 12 year old life and has been asymptomatic (though restricted on his beloved contact sports).

While I feel like we are in good hands with our hematologists, I'm confused. Every parent I've talked with, everything I've read, every Margolis/Young webcast I've listened to, and even the "Best Doctors" 2nd opinion I got, indicate that the first course of treatment for a child is a BMT if there is an HLA match. He has a younger brother. Our doctors tell us the risk of a BMT is too great since he is asymptomatic, but we also learned at the last check-up that this could be as good as his counts get. Reading about some of the relapses is scary, and I can't help but feel it's a matter of time until counts start to slip, or worse.

Don't get me wrong, I'm thrilled with his lifestyle and progress at this time. But knowledge is power, and knowing our options is important to ensure we're doing what's in his best interest as time goes on. I also have some concern when I hear BMTs are most successful in children (ages 18 and under). If there is a limited window, and my other son is a match, I need to know.

Insurance will not pay for a bone marrow match test if a BMT is not the course of action the doctors have recommended. Does anyone have knowledge of a child with a similar case whose sibling was not tested? Any suggestions? Not having this piece of data (is my other son a match??) is frustrating.

Thanks,
Becca
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