Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Hi Suzette, My daughter Miranda is 8 years old and has Complex IV. Every time she gets sick she becomes very anemic and even on good days runs in the low/normal to low ranges. I am not sure what range you are using but our hospital says 11.5 to 15.5 is normal for hgb. Miranda has been as low as 6. At that point they consulted a Hematologist and they did blood marrow tests and basically said she has the bone marrow of a sick kid. So basically they just chalked it up to the Mito. In addition to low hemoglobin, Miranda will run very low white count and platelets. Usually as she recovers from the illnesses they will raise again. -- Good evening from the Fraser Valley in Beautiful British Columbia Good evening all! Hope all is well on your end. We just met with a new doctor last Thursday who requested a slew of bloodwork, however, when we got home the doctor's office called and said they forgot to request a CBC so we went to the lab the next day to give one more vial of blood. AT approximately 9:00 pm on Friday, the children's hospital calls to tell us to bring Kayla into hospital as her hemoglobin dropped to 45 and by 12:00 that nite, she dropped to 40. We ended up spending the weekend watching her go through two blood transfusions and still no answer as to why this was happening. It brought her hemoglobin up to approx 60-70 but they still could not answer what or why. This leads to a couple questions for anybody that can answer them or have any thoughts:1) Do any of your children face the problem with chronic anemia?2) Is this chronic anemia a Mito problem or is it something totally different?We are just beside ourselves; I just resigned from my job so Kay is not left at home alone anymore and to relieve my 11 year old from the responsibility that we put on her little shoulders.You know, when I read some of your stories I feel that Kay is not that bad at all and that is why I do not come on line much as I feel I am just whining and wasting peoples time. So on that note, thank you for your time and listening to a worried mom and dad.SuzettePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Our kids have bleeding issues. I have heard from several other mito families who also have similar issues. Our son has been diagnosed with mild type 1 von Willebrand's disease. I would be shocked if he has the genetics to support this diagnosis but he does have the bleeding issues. I have also been anemic on and off and have petechiae often. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Suzette, My daughter has been transfusion dependent since birth (about every 2-3 wks). She has low hgb, neutrophils and until she had her spleen removed two yrs. ago she had low white cells and platelets. No one really knows how the bone marrow failure is concected to mito but asssume it is. they have dound no other cause for it. She is treated with transfusions and then chelation therapy beginning when she was approx 2 1/2 to remove the excess iron from her body. PLease feel free to email me personally if you have further questions, Dawn Quote Link to comment Share on other sites More sharing options...
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