hello, thank you so much for replying to my post. The hospital (in Cambridge, Uk) has just sent a sample off to Oxford in the Uk as apparently they can test for it there. I too have considered dyskeratosis congenita because I looked at thousands of pictures of tongues and the ones that looked most like my son's had that condition. He hasn't however got any problems with his nails. He has another bone marrow biopsy on Monday to see if the cells are improving or getting worse. Will keep you posted. Thanks again for the input - much appreciated.
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