Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Sonjia, is just about three and was born at 33 1/2 with the anemia. She was transfused immediatley and they could not find a reason for her anemia.At 10 weeks of age we went to the ER with a hemoglobin of 4.Her platelets were 15,000. She has received whole red cell transfusions every 2-3 weeks since then. That was her one and only time that she needed a platelet transfusion. We've had this condition called about 5-6 different things but in fact they really don't know why she has the bone marrow failure. Her ANC is routinely 500 and her platelets stay about 140,000. Her mito is still just a probable mito diorder. They cannot link the mito and the bone marrow problem.We have tried epoetin, and IVIG and had no response from either of these.Her problem is too much iron from the transfusions. She needs to have periodic chelation therapy to help remove the iron from her body. It has caused great damage to her liver already. Since July, she has been having trans. reactions which they cannot explain either.She receives IV therapy at home for 48 hrs. post d/t vomiting episodes.About a year and half ago she was diagnosed with a metoblic dis. called glutaric aciduria III. If this was type I or II this could be horrible but typeIII is benign (they think) and there is only like two people in the world with this. She is so used to all of the things that she has done to her.The bloodwork and transfusion she is so coorperative. She walks and is just starting to talk. She feeds herself and takes some fluid by mouth.She does have a gtube for meds and added fluid and 2am tubefeeds for the added calories. She also has weakness issues and energy issues from the mito. The doctors know nothing so we just treat the symptoms. They cannot tell me what to expect to have happen.We just go day to day. It is so frustrating but I am so lucky to have her.Do you have any affected siblings?It sounds like you have done amazing things and this is just a " normal " part of your life like it is to .We just don't know anything different. Thanks for sharing your story with us.I just keep hoping that someone can help us find the answers just like you do. Dawn Myers 's mom Quote Link to comment Share on other sites More sharing options...
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