Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 For those of you who have children who have had a liver biopsy, I'd love to hear more about the process. Can you get a mito. diagnosis through a liver biopsy just like a muscle biopsy? We are considering this for Carsen since his liver is abnormal. Thanks for any information. Krystena s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 Gracie had a liver biopsy along with the muscle biopsy. It really does not make the surgery much worse, but you have to spend the night. Gracie had a long process with liver biopsies, the one with the muscle was actually her third liver biopsy. They had done two of the punch biopsies before, which just kept showing damage but no reason. It was the third when they actually cut a piece out that we found out the world. She was actually diagnosed from the liver first, the results came back on this one first. Her liver actually showed more damage and more disease than her muscle biopsy. This really made us glad that we included the liver, we would not know nearly as much with the muscle along. One strong word of advise, be patient. Although we got the preliminary on the liver and all of it on the muscle, we are still waiting the EM on the liver (the biopsy was done in July). With Gracie if we ever get a specific diagnosis it will be from the EM on the liver. They have many theories of a depletion syndrome, and a carnitine transfer chain breakdown, but until the EM comes back they are just theories. At least now we know she actually does have mito, and for the most part know how to treat her. We have been super lucky because since the diagnosis, and all of her meds her liver is actually working normal. We just got her second normal liver profile, this is huge for us. She still will have permanent damage done, and always be on meds for her liver but it is not looking like she will ever need a liver transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 Gracie had a liver biopsy along with the muscle biopsy. It really does not make the surgery much worse, but you have to spend the night. Gracie had a long process with liver biopsies, the one with the muscle was actually her third liver biopsy. They had done two of the punch biopsies before, which just kept showing damage but no reason. It was the third when they actually cut a piece out that we found out the world. She was actually diagnosed from the liver first, the results came back on this one first. Her liver actually showed more damage and more disease than her muscle biopsy. This really made us glad that we included the liver, we would not know nearly as much with the muscle along. One strong word of advise, be patient. Although we got the preliminary on the liver and all of it on the muscle, we are still waiting the EM on the liver (the biopsy was done in July). With Gracie if we ever get a specific diagnosis it will be from the EM on the liver. They have many theories of a depletion syndrome, and a carnitine transfer chain breakdown, but until the EM comes back they are just theories. At least now we know she actually does have mito, and for the most part know how to treat her. We have been super lucky because since the diagnosis, and all of her meds her liver is actually working normal. We just got her second normal liver profile, this is huge for us. She still will have permanent damage done, and always be on meds for her liver but it is not looking like she will ever need a liver transplant. Quote Link to comment Share on other sites More sharing options...
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