Thanks Andy and Zaini.
Going back to your post, what did we learn from this experience. Its about time that we listen to the doctors carefully but keep our eyes open to other factors they ignore. If we had prior knowledge of osteo, the reaction would not be so extreme. Andy is right, how a child who is regularly transfused and on a good diet can develop osteo unless there is underlying genetic problem.
I think the hematologist made her diagnosis based on one factor (i.e. BMD) and ignored all other factors (we need to keep an eye on these). We know thal have osteo problems but it is more of a problem at puberty age and can be corrected. The best way is to keep learning and this forum is the best way indeed.
Canadian Family,
I am so glad that your worries were alleviated, but the worry and grief that your family has experienced due to this misunderstanding is almost inhumane. It is so terrible that you have gone through this, but now we have the information to help patients in the future interpret such results.
It reminds me of our situation when lil A was diagnosed - in the first few months we were led to believe that thal is a fatal disease, claiming most patients in adolescence, and others living into their 30s only. We were told that thals are always infertile, living very limited and disabled lives. For months we had to live with this prognosis - until I decided to take my son to sick kids in Toronto and receive more up to date and realistic information - which I was able to bring back to my city. It gave me such a sense of relief to be able to share this information to other patients so that they did not have to feel the way that we did.
I think that as a group we can save each other and so many others so much grief and pain by sharing these experiences.
I am so glad that lil Miss A is doing much better than we thought. That really broke all of our hearts and this recent appointment has made us all feel so much better. Sending much love with hugs and kisses to our princess.
Sharmin