Ok, nearly 18 months later my son is still having blood transfusions (now every 3 weeks). He has been on Desferral for 7 months and now just started Exjade instead to reduce the burden of such invasive treatment on a 9 year old. The Dr's still don't have conclusive evidence as to whether or not he has Congenital Sideroblastic Anemia or similar. We are now 2 years down the line from when all of this started having had 3 bone marrow biopsy/aspirates with possibly another in the pipeline. Is this normal or should we be shouting at the roof top? We frequently visit 2 hospitals, one for blood draws and transfusion and one for clinic consultation. Whilst at the most recent clinic consultation we were told the specialist looking at his aspiration have not come up trumps and they're now gonna start all over again. This filled us with sheer frustration.. Whilst I want them to get it right, I never envisaged it would take this long just to confirm whether or not we can look at a cure longer term. I may appear to be venting somewhat, but I feel so disappointed having put so much trust in the Dr's and don't know what to do.
I'm happy we've started on the Exjade for my sons benefit as this removes nightly needles and noisy syringe drivers. But can't help but think this is reactive rather than planned care after months of struggling.
Another part of me tells me I should be greatfull and not to question the Dr's authority.
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