Thread: New Here
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Old Fri Feb 7, 2014, 10:18 PM
Lmastro Lmastro is offline
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Join Date: Feb 2014
Location: Ontario Canada
Posts: 2
Red face New Here

Hello, I have a 7 year old son, that I am told has an inherited bone marrow failure syndrome, I am very confused, and unsure of what to do going forward, he has had multiple health problems since birth, chronic infections, neutropenia, failure to thrive, high platelets, but his hem/onc has never done a bone marrow biopsy. His health has been very poor in the last few months and he currently only weighs 35lbs. In the last year and a half I have had 2 stillborn boys, I have a daughter that is 4 and she is healthy. There is a lot of question whether it is a genetic disorder. We are being followed by genetics, hem/onc at toronto sick kids and Endocrinology, but living in Ontario our health care is very slow. I've asked for a bone marrow biopsy but hem/onc says he wants to wait, his counts last week were: neutrophils 1.2 and platelets 415. We are currently looking to get a second opinion, so we are willing to travel to the US and pay out of pocket, does anyone have any direction. Is there a specific hospital that is better to deal with in this situation?
Any advice would be very helpful!
Thank you
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