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aysam update

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aysam:
hi all guys how are u h andy miss u all
update aysams iron
6000 .....
they wont to do liver biobsy
his haveing irreagular  heart me and they are still tellng me he wil be fine please i want the best chronic center the best doctors in this world i will take him there i had enough
i feel my son is like a guinni pig  for the doctors here they are not telling me the truth
they said oh you dont know he could me walking playing and could just have a heart attack becuse the just dont know how much iron is in his liver please
is 6000 to high he is 4 he weight is 18 klloos he has been on exjade for nearly three years
his iron levels arnt comeing down but going up
he has now maybe heart problems help me ....
were do u i go ii need the truth

Andy Battaglia:
Hi Mariam,

What is his dose of Exjade daily? Has he been taking it every day? Are you back in Australia?

Manal:
Hi Mariam,

I am so sorry to hear this, but with this level of ferritin he MUST be on combination therapy and IV desferal is so esential in his case becasue it will quickly lower these levels

manal

Sharmin:
Dear Mariam,

I am sorry to hear about this.  I truly hope that you are using combination chelation for our little Aysam.  He must must must be on desferal and exjade together and his compliance must be 100%.  IV desferal, as Manal has said, is essential right now for him.  Your compliance with chelation, as he is too young to do it himself, will determine how healthy he is and how long he lives. 

Are the doctors there refusing to put him on IV chelation?  Are you using desferal and exjade at home?  What dosages are you using? 

You are a very kind and compassionate woman - you have done so much for your son and for others.  My prayers are with you and your son.  We are here to offer any support and advise that we have access to. 

I wish there were to way to place Aysam under the care of Dr. Vichinsky. 

Sending my best,

Sharmin

aysam:
h andy yes got back t australia 3 weeks ago his dose is 750 ml daily and yes every day 500am he takes it no food i gve it with some apple juice

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