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My son has just turned 8.Last october his blood tests came back that his hb levels were at 5.4(.He had prior to that for 3 years been taking iron suppliments.)Was taken into hospital and had more blood work and bone marrow aspirate done.Drs were completely baffled and still are as to what is wrong(realised it wasnt an iron defincany prob,no longer takes iron).Have gone along route of sideroblastic anemia,but have ruled that out.Have now mentioned Congenital Dyserythropoietic Anemia,but are still unsure as there are several different types.Have told us that they need to find a reserch team to research it for them,will probally need fresh bone marrow to use.My son is now on 4 weekly transfusions of pure red cells which he has been since nov/dec 2010.
My husband and i feel like the drs arent telling us everything and that we are slowly going made.
Also have concerns that he will have the iron excretion to go through at some point to.
Any bodys advice/reasurance would be greatly appreciated.