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who is going to singapore? im going i dont know what i will be getting out of it

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aysam:
hi i am going to this confrence in singapore please anyone tell me what are we going to get out of this also anyone help my son 2i started using desfral for one month his stomach was so so big we had to stop dont  know why they never ever seen anything like this  there whole life now he is on the exjade wich i know and heard many side affects his iron is 3000 and not going down his stomach always bloats like a pregnet women even though he stoped the pump they said if his iron dosnt come down soon they will have to do something else 24 thing to  get rid of his iron and a liver biopsy the only reson i am going to singapore is to find out has anyone ever seen anything like this it is really shocking his stomach it gets so big that he cant even walk anyone know anything plz help me help him my angle with thalplz reaply  sweetmm76@hotmail.com and if anyone is going to singapore i would love to meet anyoe i feel i will be all alone i dont no anyone im from sydney australia  ??? :dunno

Andy Battaglia:
Hi,

There will be a nice group of people from this group attending Singapore including me. I am very easy to spot so please introduce yourself to the bald American. There are also many programs aimed at patients and parents where doctors will be present, so you will have opportunity to present your story and ask your questions. My advice is to write down everything you want to say so you are prepared and can get the most out of it.

Once again I want to emphasize that many patients do not see their ferritin drop when starting Exjade and often see a rise in levels. Please be patient as this trend does reverse although it may take more than a year to see it reflected in ferritin levels.

aysam:
his wight is 13killo and his on 125m exjade but they said they are going to incresse the dose as his iron isnt  lowering

Andy Battaglia:
Aysam,

What dose of Exjade is he taking and what is his weight? Have the doctors said his spleen is enlarged?

We do have some members from Sydney in this group and thal care there is good. Where is your son being treated?

§ãJ¡Ð ساجد:
Oh dear, :-\

I wish that there could be something that we can do about your son's condition? 3000 S.F doesn't seem that much for this kind of abdominal expansion or maybe it is for your baby's age as I'm comparing to my self who had a S.F of 9000 about 6mo ago and my stomach was not enlarged that much.

I remember I once had an Ultrasound done (during that horrific Platelet incident several years back) because my stomach was enlarged a little  and the doctor wanted to see if the liver or spleen was enlarged. The result came out negative and the abdominal enlargement was due to excessive fluid in the abdominal cavity; either due to Hep C or just iron loaded liver. Anyway it eventually cured itself as it wasn't too much either.

Maybe you can ask your doctors about it and have an Ultrasound done to see if this enlargement is due to the enlargement of organs or too much fluid.

May I ask the Hepatitis status of your baby?

Praying for your son :pray

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