Discussion Forums > Announcements
1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria
Manal:
Mariam, what is Aysam's weight and dose of exjade ???
manal
aysam:
his weight is 14kilo his on 375 a day
aysam:
just need to know
doctor says that his iron is high but it wont affect until 10years so we have time to take his levels down
i asked for a biopsy and she said that no need for on we will wait first she don think the liver or any organs is damegd ?
well a the confrence in singapore i heard a doc say he did liver biopsys fortwo pautents one with high feritin one with low and the shocking thing was the one with low ferritin levels had damage to the heart and liver so not everton is the same i suppose dont you agree ?
Manal:
Mariam, the chelating dose for his weight should be at least 420 mg. Usually it takes up to a year to see a decrease in ferritin when you start the chelating dose.
In aysam's case i believe so much that taking desferal via IV for a while will help so much in decreasing these levels.
As for organ damage, i think that only the MRI or the biopsy are the only tools that tells you about the damage
manal
aysam:
420 wow big diffrence from what he is on now
the doc just started him on 375 last week
i dont knwo manal the dc said in a few months she wll also put up the dose
yes you are right that the organ damage nowne can now until mri or biopsy well this doc thinks she nows everythink
and no they will not do iv for him they have refused to do this
manal his hb is each time going down faster why you think ?
his live gose up then down like a roler coaster
if he has alreday damage in live dose it sow in his bloods and also
3400 ferritin to high ?
i am going to lebanon all i waitting for his aysam papper work itr is takeing so long he needs to be lebenisse to get cheaper hostpital there so iam leaveing this country and i am praying by may my sons papper work are finished as i wont to take aysam to lebaonon and syria
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