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Old Fri Mar 4, 2011, 04:39 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
I would encourage you to contact his office. I know he's worked with children and he will either work with you directly or with a pediatric doc at the clinic. He worked with Dr. Young at NIH, who pretty much is considered one of the top docs when it comes to SAA.

UH has a good reputation as does CC. But I still feel you should seek another opinion especially since one of the top docs is in your backyard. The reason docs take on kids is because AA is so rare and there are so few doc with extensive experience with it. I know our doc at Hopkins worked with children indirectly. By that I mean, the parents set up a consult with him and then he continued to work on the case with the pediatric Hematologist to treat with his protocol.

Take some time to read through Sherri's caringbridge blog. I think they started at UH also. http://www.caringbridge.org/visit/an.../createdAt/asc
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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