Discussion Forums > Announcements
1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria
Manal:
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
Sharmin:
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
aysam:
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
erum minhas:
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
Dori:
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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