I feel i have reached the end of my road.....

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Offline aysam

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Re: I feel i have reached the end of my road.....
« Reply #90 on: August 12, 2009, 05:32:16 AM »
thanks sweety
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline maha

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Re: I feel i have reached the end of my road.....
« Reply #91 on: August 12, 2009, 09:50:12 AM »
Mariam
The iron level does come down quickly with IV desferal. One of our members ( Life is beautiful ) had experienced a drop from 4000 to 2000 in just three months. His daughter was given 60 hours IV desferal every time she was booked for transfusion. Aysams ALT is very high and I am surprised he is on a high dose of 625mg. What is his weight? Wishing the best for your little boy

take care
maha

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Offline aysam

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Re: I feel i have reached the end of my road.....
« Reply #92 on: August 12, 2009, 01:04:30 PM »
hes weight is 15.8 kiilo
he gets 232 mls of blood he gets it every 4 weeks
i spoke to dr suzzana at chronic center in lebaonon
she works under professer ali taher
and she said not to do the liver biopsy he is to young and she also said that they have the mri special ma=chine wich she will book him in to get done as soon as i get to lebaonon and also she promissed she will get his iron down ,


what do you all think he is only 3 years and 2 months old oh my god i am so afraid im leaveing on the 17 september to go i hope to god im makeing the right desseion
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline maha

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Re: I feel i have reached the end of my road.....
« Reply #93 on: August 12, 2009, 01:42:38 PM »
Mariam
Aysam is getting nearly 40mg/kg of Exjade. Usually when the ALT rises the dose of exjade is either reduced or temporarily discontinued till the ALT comes down.There is almost a month before you leave and Aysam will have a transfusion during this time. I feel it would be good for Aysam if IV desferal could be arranged continuously for three days. You could discuss this with your doctor.

Andy
Little Z was asked to discontinue Asunra for a week when her ALT reached 231, and she was on the 30mg/kg dose. Aysams ALT is over 600 shouldn`t he be discontinuing Exjade altogether for a while.

maha

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Offline aysam

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Re: I feel i have reached the end of my road.....
« Reply #94 on: August 12, 2009, 01:49:26 PM »
you are right his alt is nearly 700 high but the doctor said that it dosnt matter and nothing is getting damaged i asked about iv desfral she said no she dosnt think its neccasary ???? see why i am levaioning to lebaonon when they saw the results of alt they showed me its nothing its ok m
he will be fine i swaer she saids i have seen higher alt so aysam will be fine ????? i told her im going to lebaonon u know what she said
are u going for treatment ? she asked i said no i said a holiday she said u know that lebanon have bad blood there he could catch something its btter i treat aysam i laughed .
so u see whats happeing i im in privet health fund so everythime she gets big money from me i acctuly think they are using him as a guinne pig to see what will happen
what do u think is the levels at this rate doing any damege
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Zaini

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Re: I feel i have reached the end of my road.....
« Reply #95 on: August 12, 2009, 04:28:59 PM »
Mariam,

I think you should discontinue exjade for a while,my daughter's SGPT reached 231 and her doctor has already discontinued her exjade,we'll wait for a week,repeat the test and then we'll see what are the levels,700 is too much and Aysam is so young,can't you change your doctor while you are in Australia? One of our members Smurfette is also in Australia and she is managing herself very well,you can PM her and ask her if she can guide you to a better doctor.

Good luck,

Zaini.
^*^Xaini^*^

Re: I feel i have reached the end of my road.....
« Reply #96 on: August 13, 2009, 03:22:23 PM »
hi,
    i think he had to:
        a) visit Dr Taher
        b) stop exjade
        c) go on IV desferal
        d) consider causes of this acute hepatitis due to infections:  Hepatitis A(from food) and B virus(from contaminated blood)
        e) what about fever, anorexia , malaise and appetitie?
        f) what about differential complete blood count? and retics?
        g)what about bilirubin details (direct and indirect)?
        h) what about LDH?
        i) finally what about CT scan?
thank you
Mohamed
       
       
                    
« Last Edit: August 13, 2009, 03:31:13 PM by mohamed »

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Offline aysam

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Re: I feel i have reached the end of my road.....
« Reply #97 on: August 13, 2009, 03:49:07 PM »
.o.m.g mohamad stop u want some more shocking news u will never belive what happen my hussbasnd called and told the doctor
we are not going through the liver biopsy

we are takeing our son to lebaonon w
she wasnt happen at all u know what she said
she says i have to put aysams exjade up from 500 to 625 ml
my hussband said are u ok u put it up 2 months ago
shows u the hematoligist really knows what she si doing she said no its got 500

on my papper work hello u wrote the script for us doctor mmm?
then she said oh now i know why his liver test are redaing very high
help me man whats going on is this like a conspiricy or is my son a guine pig
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline aysam

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Re: I feel i have reached the end of my road.....
« Reply #98 on: August 13, 2009, 03:50:55 PM »
mohamad we asked to considir the ct scan intead of liver biopsy she said his to young and she advise to go to lebaonon she said they hae bad blood banks there walla
thsi si what the dioctor told me
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline aysam

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  • my litrtle man
Re: I feel i have reached the end of my road.....
« Reply #99 on: August 13, 2009, 03:57:45 PM »
sorry mis type she advises NOT TO GO TO LEBANON she said the have bad blood bank
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

*

Offline Manal

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Re: I feel i have reached the end of my road.....
« Reply #100 on: August 14, 2009, 12:26:51 AM »
hi Mariam

I suggest  that you can re-examin the blood bag again on your expense if you will need to transfuse Aysam in lebonan. I don't say that they have unsafe blood cause i don't know. But if i were you i will do this to eliminate any concerns


manal

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Offline nice friend

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Re: I feel i have reached the end of my road.....
« Reply #101 on: August 14, 2009, 11:16:55 AM »
Mariam Sis ,
Wishing you & Aysam best of health and good luck , may ALLAH (GOD) bless him with the best of everything Ameen ...

lots of best regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

 

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