Cynthia, thank you so much for your response. I would love to be involved in the National Urea Cycle Disorders Foundation. This has been such a devastating event for our family that I would like to help in any way I can to keep others from having to go through this. I would like to know the long term prognosis for adults who lived through this. We seem to have the metabolic condition under control, but no one seems to know how much of the brain damage is reversable. The doctors are not used to working with a brain that has been affected by such high ammonia levels. They are really not able to give me any kind of prognosis. Can you tell me what you know? My husband's brother died of this (so we know now) 20 years ago because they didn't know what it was and never even checked ammonia levels. He has a cousin that we didn't know about who lost 2 brothers to this, and he and his other brother have it but it is under control. I guess I am looking for some hope. He has been in a coma for almost 8 weeks now. I would appreciate anything you can tell me.
Tina
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Cynthia, thank you so much for your response. I would love to be involved in the National Urea Cycle Disorders Foundation. This has been such a devastating event for our family that I would like to help in any way I can to keep others from having to go through this. I would like to know the long term prognosis for adults who lived through this. We seem to have the metabolic condition under control, but no one seems to know how much of the brain damage is reversable. The doctors are not used to working with a brain that has been affected by such high ammonia levels. They are really not able to give me any kind of prognosis. Can you tell me what you know? My husband's brother died of this (so we know now) 20 years ago because they didn't know what it was and never even checked ammonia levels. He has a cousin that we didn't know about who lost 2 brothers to this, and he and his other brother have it but it is under control. I guess I am looking for some hope. He has been in a coma for almost 8 weeks now. I would appreciate anything you can tell me.
April 4, 2010 - 7:50pmTina
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