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for everyone from aysam

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aysam:
hi everyone ,
this is aysams mother and i want to thank everyone who is asking about my little man
i thank you all and i know i have been so selfish by not returning any replys i
 have been not feeling to good
aysam he is doing well and getting older but his blood results arent they are getting worse
i did go see this doctor for a second opinion
she really is god but also confussed she also hasnt seen a case like aysam before she said she has at least 30 paitnets and none of them are like aysam
i am still on exjade his liver test just keep jumping i had tp stop for a week becuse it jumped to 259 then it went down now its up again when i started it its confusseing they tell me not to worry but i have some good news his feritin is now 3000 it was 4000 so good news i suppose but all other test arent to good
i wantted to ask if the liver test keep changeing up and down is this going to harm in the futer ?
i dont know ?
can anyone expliane



liver unction test
bilirum total           9

aspartate txaminase   130

alanine txaminase       300

gamma glut txferase     17

alkaline   phophatase        180



albumine    46   


all theses are very high  they tell me the normal rage is from 10 to 50
and then they tell me dont worry his hemaglobion has been droping to 9 in the third week of transfusion

so  if some can understand please help me understand becuase i dont the doctor says dont worry we have seen higher liver test ? mmmmm i think they are using my son as a gunnie pig
 :dunno    i dont


merry christmas andy and evryone  :hugfriend

love you all

Andy Battaglia:
Hi Mariam and Merry Christmas,

It is common for liver levels to elevate when first starting Exjade. This has to be watched in all Exjade patients and in most patients, these levels will decrease as the body adjusts to the drug. It is an excellent sign that his ferritin has finally dropped and shows Exjade is working. The doctors will continue to monitor his liver levels. If they don't continue to rise it should be OK to continue with Exjade. I doubt anyone can tell you what the long term effect of Exjade is on the liver and kidneys because it hasn't been on the market long enough to know. Unfortunately, this has been the dilemma that thal patients often face. They are in fact, the guinea pigs for each new drug. But keep in mind that the oldest thal patients today were those who were the guinea pigs for desferal, and that has worked out pretty well for them. This is the reality of thalassemia. If you want a chance to take advantage of new therapies, you often do have to be one of the guinea pigs to see if it works and is safe.

I hope you are still planning on going to Lebanon for a consultation. Each patient is different and it is best to design a treatment program based on that patient's needs and you should see if they can put together a program for Asyam that can be followed by your doctors in Australia. Also, please have your daughter checked out. Her Hb is very low and you need to find out why.

maha:
Hello Mariam
I am glad Aysam`s ferritin has started to drop. Inshallah may all his other issues solve quickly too.
take care
maha

Zaini:
Hi Mariam,

Good to see you posting again,keep posting so you can share your problems and get your answers,love to Aysam  :hugfriend .

Zaini.

nice friend:
HELLO Aysam's mom ,
 :getwell for your Son ...
May God bless your child with a good, healthy joyfull life ...
Wish you, your son and your family all the best of everything in life. ..
don't loose courage bcoze its something that is realy usefful to fight against anything in the world ... :getwell

Best Regard
Take Care
Umair

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