Discussion Forums > Thalassemia Major

aysam update

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aysam:
manal sharmin ho u you guys and kids no he s only on exjade 750 ml daly they wont put him on two types ( protocol ) wont i dont know anymore ,,,, what is happeng i really dont understand remmber the desfral he has reaction ad iv  desfral they said will be last opstion wich is when too late ???  rang them few days ago and said a spcisilist said that his heart is nornot good and they sad oh maybe running orund to muchor  has virus mmmm i duunno i think they dunno hello its just oviouse from to much iron ,,,but they wont admt t s 6000 to much and what shall i do can he really have haert attack on this level they telll me its not to bad they seen worse so i wont out i want better

Andy Battaglia:
Mariam,

The dose is right. How long has he been taking this dose? Have there been any periods recently when he was not chelating? I am asking questions so I can form an opinion about whether or not Exjade is right for him. If the dose was recently raised or he missed some time chelating due ti illness or anything, that would be significant.

aysam:
he is been on ths dose for one year and half and never missed dose ... i giive to him 500 am every day mix it wth apple juice he drnks t all

aysam:
can y please get back to me

Sharmin:
Maryam,

Aysam is young, I think that he will be fine - especially considering that he is being chelated.  For some patients, despite having a low iron level their ferriin levels appear higher.  Exjade binds free iron in his body which provides some protection against free radical damage.  Giving him a very healthy diet, IP6 and other supplements such as vitamin E will protect him as well. 

We will all try to help you as best as we can.  Of course our advise does not substitute proper medical examination and treatment.  Are you giving him L-carnitine?  MRI will also tell you about his actual iron levels. 

Sending you my best,

Sharmin

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