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

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 

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.

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

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?

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

I'm sorry to hear how distressed you feel.  I hope that your son's problems are resolved soon. 
My son also had a S.F. of 2880 in June - combination therapy Exjade/desferal seems to have helped - as his last S.F. was 1320. 
I hope that your son's ferritin will drop very soon.  I think that many thals have distended stomachs - but if your son's stomach is concerning you, you should have an ultrasound done. 

Praying for you,

Love,
Sharmin

thankyou for all your support and concern maybe i worry just a bit to much i just cant seem to cope anymore everyday new thing for him it dosnt end and every time i open this websiite i read IN MEMMORY OF  it freaks me out i dont sleep i panic i  am so afriad for him and what the futer hold for him i undersderstand that years have made who has thalassemia better but still when i seem to open this site i find a another victim had passed due to thalassemia so you can underrstand all for my concern i have 4 girls and one boy i am 31 years and i think it will take me  another  31 years to cope he is only 2 half years old and he never puts on wight from when he was 11 months old to now he is 12 to 13 kilos it breaks my heart to ser him so skinny and he is short but he looks so normal to me i understand a feritin level is not much 3000 but it isnt going down his heart beats so funny and fast always his stomach is only large like the pic only  when he used desfral now on exjade 125m daily it seems ok but iunderstand this side affects to exdjade and this worries me i have spoken to somene from this group and he told me to take him to italiy but my son dosnt have a match for a bone marrow transplant so this is why i have given up on this cure i was told that half a match may fix it but even though its a very very big dession to make for a another human been i cant make this desion even though aysam is so young and may not understand everything but he didnt ask me to make a dession that may kill him with the BMT so i wish and pray for all in his shoes and hope that this will get better for him by time and i  hate to see anymore IN MEMMORY OF on this site i i and dont sleep as if i new the person or as if he was mine as we are all in the same boat

Hi Guys

I forgot to tell you somehting hilarious. U know how Andy keeps on saying " look out for a bald American white guys and I'll be easy to spot, you cant miss me". I went to the airport to pick up Andy and I thought I was running late so was a bit flustered. AS soon as I reached the airport i had no idea wether the flight has landed or not so I am looking for  a  white bald guy desperately. Now as luck would have  it,  there were 3 Bald white guys, I said wow to myself today we have an airport full of them.


 I almost said hi to one of them and another one didnt look at me  so I had to run after him to see wether it is really Andy and finally I saw Andy and he recognized me and my daughter.


Not so easy to spot Andy after all.

 

Zaini.

That's funny Puja 
glad you finally found him! 

LOL! Regardless of how many guys are looking like me, I can safely say, there is only one me. 

i think Poo gill were wondered that there are three andy .... LOL

Of course, you are one and only Andy  .

Zaini.