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Old Wed Jun 11, 2008, 11:58 PM
skoopman skoopman is offline
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Join Date: Aug 2006
Location: CA
Posts: 54
Henry's Mom,

I haven't checked this board in a while so I just now found your post. My daughter was diagnosed with AA at the age of 4 as well. We ended up doing ATG which she didn't respond to and then looked for info on a BMT.

Dr. Margolis is an AMAZING doctor! We live in California and we went to Wisconsin so my daughter could have her transplant there. He is a kind, caring, devoted, and most importantly, knowledgable, dr.

You asked if there was any advice that people would have known from the beginning. A couple of things...

1. Keep track of all lab work and blood transfusions. I put Michelle's in a spreadsheet. If you want to see an example let me know and I can email it to you.

2. Do research and ask questions. When you are done, ask more questions. You will find many dr's who claim to be experts in AA, however many dr's haven't treated more than a couple of AA kids, if that, in their career. There are very few dr's who are truly experts in the field...hence our temporary relocation to Wisconsin for Dr. Margolis.

3. Be prepared for a wait. AA is a disease that requires a lot of patience.

Let me know if you have any questions. You can email me privately, suzanne_koopman@pacbell.net, or post here.

Suzanne
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Mom to Michelle, age 7, SAA 6-1-05, rabbit ATG 6-3-05, MUD BMT 11-11-05
www.carepages.com Page name, Michelle5
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