Discussion Forums > Announcements
1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria
Sharmin:
Dear Mariam,
Yes, Aysam's ALT level is high, I don't know what the long term complications of this would be. Right now the most important thing is to ensure that he gets proper chelation because that will release iron from his liver and improve its function. Most importantly, you need to protect his heart and if the iron levels remain high damage can occur in his heart. Our main goal is to get those levels down.
Aysam should be on IV desferal for a few weeks - and you should continue this until his iron levels are below 2000. If his liver enzymes are so high then perhaps you should be using desferal all of the time - it will be best for him at this time. Perhaps, once his iron levels are down and his liver enzymes return to normal you can start exjade again. This is my opinion, perhaps you can discuss it with out doctor. My prayers and best wishes are with you that all of this resolves and Aysam will be on a regular transfusion schedule soon.
I wish the little guy all the best,
Sharmin
Sharmin:
Dear Mariam,
Yes, Aysam's ALT level is high, I don't know what the long term complications of this would be. Right now the most important thing is to ensure that he gets proper chelation because that will release iron from his liver and improve its function. Most importantly, you need to protect his heart and if the iron levels remain high damage can occur in his heart. Our main goal is to get those levels down.
Aysam should be on IV desferal for a few weeks - and you should continue this until his iron levels are below 2000. If his liver enzymes are so high then perhaps you should be using desferal all of the time - it will be best for him at this time. Perhaps, once his iron levels are down and his liver enzymes return to normal you can start exjade again. This is my opinion, perhaps you can discuss it with out doctor. My prayers and best wishes are with you that all of this resolves and Aysam will be on a regular transfusion schedule soon.
I wish the little guy all the best,
Love Sharmin
Sharmin
aysam:
thankyou yes i agree he should be on iv too
but doctors dont there saying hisliver test are high becuse of exjade not ironl evels ? do you agree
and when the liver is high whats happeing to it ?
Andy Battaglia:
I agree that the high liver levels are the result of Exjade. If they don't drop, I think he should switch to desferal until he is older.
Sharmin:
Mariam,
I think that it would be best to have Aysam on IV desferal immediately. Once his iron levels are below 2000 you can do a good job of keeping his iron levels down by using desferal at home 5 - 7 nights a week, 12hrs a day. Once you get his levels down further then the doc may reduce his desferal to 3 - 5 days a week depending on his levels. These measures will protect him from harm.
You will probably notice his liver enzymes normalizing at this time as well. Once he is older you can try oral chelation again. Who knows by then, perhaps more options will be available for chelation. For now desferal is his best option. It is hard at first, but if you are sure not to have any fuss surrounding it he will soon adjust.
Best of luck and keep us posted on how things are going with the desferal,
Sharmin
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