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

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aysam:
manal you there candian famaliy anyone

maha:
Hi Mariam
I can understand how frustrating it can be when you are doing everything right and not seeing the results you expect. Have patience and inshallah you will be able to see a drop in his ferritin. Last month my son`s SF was over 3000 and this month it is 1858. You will be able to see a drop in his SF soon.
Lots of love to little Aysam
maha

aysam:
i am so glad and hapy to hear ur
angles iron has drped so fast
bu sweety in my sons case its been from september last year untill now his ferritin lebvels are in the high ow it has gone down um maybe 300  only

maha:
Mariam
What time do you give exjade to Aysam. Is it the same time everyday? Are you using a plastic spoon and cup to mix exjade? You have to wait for atleast half an hour before he gets to eat anything? If you are following all of these and still his ferritin isn`t dropping then like Andy said for some it takes six months to one yearfor the SF to drop.You just have to play the waiting game.
take care
maha

Manal:
Mariam, the doctor is right about starting the exjade with a low dose until the body gets used to it to avoid the side effects, then this dose is increased to the chelating one which is the effective one. Even the effective one takes time to see results. The effective or the chelating dose is 30mg for every kilo, so for aysam's weight , it is 14 kilos x 30mg = 420mg
This is the end dose he should reach according to his weight but the doctor has to start with a low dose until he/she reaches the the chelating one.

I am sure that when you go to Lebonan, they will agree about the desferal via IV . Good luck in all your procedures.

As for the increased hemolysis, was aysam ill or had any infections recently. Infection usually cause the Hb level to decrease more than the normal frequency. If not, an antibody test should be done to detect if there are any antibodies in his system that contribute to this hemolysis. The name of the test ids Coomb's test

manal

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