1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria

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Offline Sharmin

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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

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Offline Sharmin

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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
Sharmin

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Offline aysam

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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 ?
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Andy Battaglia

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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.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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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
Sharmin

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Offline Manal

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Sharmin but Aysam has allergy from desferal and i saw the picture of his tummy so enlarged after taking it. Do you think IV will have the same effect???

manal

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Offline Sharmin

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Manal,

You are right, I just remembered his distended belly.  I wonder if that was an allergy to desferal.  Mariam - had Aysam's belly returned to normal since you have stopped desferal?  Perhaps the hospital can test to determine if Aysam is allergic to desferal.  This is difficult because Exjade seems to be affecting his liver enzymes and his iron levels are increasing - so desferal would seem like the logical solution to lower his ferritin and to allow his SGPT to return to normal - as long as he is not allergic to desferal. 

I wonder if L1 would be a solution for him?  Or is he too young to take L1?  I hope that the hospital will do a test to determine if he is allergic to desferal - I know that they can desensitize him to desferal as well. 

Please let us know how it goes,

Sharmin
Sharmin

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Offline aysam

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the doctor called me today and said its fine for his liver to be 285 and his hemaglobion 9.8 not to panic
so have given up
they said they saw higher liver test he should be ok
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline erum minhas

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salaam
first of all i really appreciate you ,what you are doing. taking care of 9 kids with one thal major is great job , may allah give you best in this world and here after
i am a doctor treating thalassaemics in karachi, dear high ALT doesnt mean liver demage only ,there are lot of conditions in which it raised important is that when u stop exjade ,does it come down in two weeks or not, have you ever done his liver biopsy , how is cardiac status and general health.

erum minhas

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Offline Dori

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I have talked about that type of iron overload with people who know lots about it, but I dont believe Aysam got it. The name is "Neonatal Hemochromatosis". Please, forget this word.

Best Wishes, Dore

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Offline Manal

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Dear all

Finally i will be able to attend the Syrian conference. I will leave for Damascus, Syria next Thursday and will be back on Sunday the 3rd of May. You will find in the following links the final schedule for the patient and scientific program. Please feel free to post whatever you want me to ask about.

http://www.thalassaemia.org.cy/pdf/scientific_programme_FINAL.pdf

http://www.thalassaemia.org.cy/pdf/patients_programme_FINAL.pdf

manal

 

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