aysam update

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

Hi Mariam,

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

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

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

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

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

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.

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

can y please get back to me

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

Has Aysam's ferritin been high all along or was this a sudden increase. It doesn't seem to make any sense that he makes no progress with his iron load. I think you need to give Exjade a couple more months. If no progress is seen, IV desferal may be the only choice. This will reduce ferritin more quickly, so I would recommend it if his progress still does not show.

I would also agree with what Sharmin said. Give him vitamin E and IP6 if you can find it. This will give his heart some added protection.

update aysams iron
6000 .....
they wont to do liver biobsy

I am trying to determine 6000 in which units, is it ug/l or something else. Can you talk to the doctors, what is the normal level of ferritin in thier standard. It does not make sense that Aysam is taking 750mg exjade for last one year and his ferritin is so high.