Dear Mariam,
It is not you, it is in fact them. They are sticking to what they know and they are not altering the plan for your child. In most cases, that I have seen children's ferritin levels are not this high so quickly, but for whatever reason Aysam has overloaded very quickly for someone his age - and for someone who has had so few transfusions. I wonder what else is playing a role in all of this - the low mineral values, the inflammation/infection type results - a few things are telling me that he may be celiac. I don't know enough to help you confirm this but he has had a very bloated belly, he has the antibody often associated with celiac and the bleeding that you mentioned. I wonder if this is somehow contributing to the high iron levels somehow - which is in turn accumulating in his liver and causing all of the symptoms of iron overload.
His doctors should be treating him as an individual rather than sticking to the normal protocol, because most kids will not have get iron overload this early.
You are not over reacting, trust me I have panicked many many times when I was confused about a test result. How can you not? It is your baby. I have been trying to get more information for you such that you can get the treatment you need in Australia. I will get back to you when I get a response. BTW have you sent a PM to smurfette?
My son had an iron level of 2880 - combination therapy - dfo/exjade lowered his ferritin levels to 1320 within 6 weeks. It really does work.
Please find out if he has digestive issues and let's get those iron levels down everything else will follow. Please also make sure he gets his supplements, he needs to be protected from the high iron levels. Make sure that he never goes 24 hours without chelation.
I will let you know if I find out anything else, I am sure Andy will give you the most complete answer!!
Sharmin