Suggest Treatment For Pearson S Syndrome In Babies

My 17 month old daughter has been diagnosed with Pearson s Syndrome. Perhaps I donot need to explain this to you, but to date O s bowel movements are loose yellow with white seeds in it. We were just hospitalized for 2 weeks and they are saying it was Gastro but one of the interns said that nothing grew. Could you tell me what is happening?? I know the start of liver failure is what I have been told and read... please help, I really don t want to loose her, not yet. A little girl from Ohio just passed away with the same disease, she was 2. After talking to her mom, O is having so many of the same symptoms that E did. Is there anything I can do that I am not doing already. She is taking Carnitine and Menadione. She was on a vitamin cocktail of thiamine, B12, co-enzyme Q10, riboflavin and something else but I forget at the moment. Blood transfusions every 4 weeks as hgb depletes. Platelets as off late as they are always at 20- 30, neutrophils.01, I can go on, but will it help in an answer or not... look forward to your input. We have a sight with facebook, Pearson Syndrome Network. I am very fortunate to know someone else with this disease as it is very rare. CK