Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: ann_adeline on October 19, 2010, 01:30:44 AM
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Salam & Hi to everyone here....
Brief intro of myself:-
I am a mother to a 4 years old lil' girl named Ungku Zarith Adeline who was diagnosed with Thalassemia Intermedia yesterday, Monday 18.10.10 after being warded in the hospital for high fever. :(
Both me & my hubby were speechless when the doctor informed us about her condition.. we just did not know how to react to the news and both of us were so lost at that moment. :huh ???
But after a while, I tend to accept the fate and has been googling here and there for Thal Intermedia... for me to learn and to know about it.
And I hope.. being a member of this forum, I can get more information about Thal Intermedia and at the same time have someone somewhere who can always be there when I need to talk to..
Thanks for giving me the opportunity to join this wonderful group.. :hugfriend
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Welcome to the forum.
Dont worry too much, there's so many expert here to help in any way ;). Unfortunately i'm not one of them. Insya'ALLAH everything would be fine.
Ask whatever you need to.
Nak tanya sikit, how come tak dapat detect awal-awal lagi? dah empat tahun baru dapat tahu ni,,,emmmmm
L (father of Aqeel Al Haady)
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Hi ann_adeline and welcome to the site :biggrin
Do you know the Hb of your daughter?? Which tests did you perform to get this diagnosis??
Please feel free to ask whatever you want
manal
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Hi and wasalam ann adeline :)
:welcomewagon on the forum , you have come to the right place,i hope your daughter is feeling well.
My daughter is also a thal intermedia but the doctors started transfusing her right away after they diagnosed her.
Plz feel free to ask any question you have in mind.
Zaini.
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Welcome to the forum.
Dont worry too much, there's so many expert here to help in any way ;). Unfortunately i'm not one of them. Insya'ALLAH everything would be fine.
Ask whatever you need to.
Nak tanya sikit, how come tak dapat detect awal-awal lagi? dah empat tahun baru dapat tahu ni,,,emmmmm
L (father of Aqeel Al Haady)
Salam L...
Well.. she was a premature baby and she was fine and healthy. Cuma bila dia demam, akan terus high fever & will look very pale. We never bothered about Thalassemia for we guessed it will never gonna happen to us. But after she was admitted early this month for high fever, blood sample was taken and the doctor did preliminary check on her, her spleen bengkak & her hemoglobin was 8.6. Doctor suspected Thal. so proceed with blood test etc... and last Monday, result came out and she is positive Beta Thalassemia Intermedia.
If detected early pun it will not change anything, kan? :(
Are u a Thal too?
Salam... Ann
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W'salam,
It seems that i'm a carrier (HbE)and my wife too(Beta) on which we didnt even have the slightest idea on it. We only knew it when my wife was carrying Aqeel. To make the story short, we were told that the chances of aqeel getting was 1/4 and when Aqeel was 6 months old, the doctor has confirmed that he is HBe Beta Thallassemic.
You're right actually, detecting it early does not change anything. Well 1 thing for sure its better to know early rather than later ;)
Dont worry too much Ann, Insya'Allah everything will be fine. I understand your worries etc, If you read the tread On Aqeel Latest Update (bacalah kalau ada masa), you will find most of your questions answered by the very best & knowledgeable people around.
Tomorrow Aqeel will be 4 Years old, he's doing fine. He's currently being transfused on monthly basis. If fact dia punya spleen pun bengkak jugak sikit (5cm if i'm not mistaken) . I'm worried about that too actually to be frank, just that his iron level is less than 1k so tak perlu buat iron chelator lagi.
From my experience, when demam hb memang turun,,Aqeel hb dia dalam range 7-8 je all this while, bila transfuse je it shoot up sikit. Dulu doctor suggested to us to transfuse when his hb is lower than 7. NOW, the doctor suggested that we do transfusion when his hb is less than 10.
Nice having you here,
Later
L
Putrajaya/Kajang
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Nice to see some fellow Malaysian on Thalpal. I'm Syaida mother of Adel Rais (3 years old) Beta Thal Major. Adel's condition is much more complicated than both your children. I don't even know where to start to relate the story of my lil guy. Anyway, we are thankful that he has made it this far. I'm glad to say, ever since Thalpal, Adel has improved a great deal. I'd previously overlooked his nutritional aspects. I'm on Facebook, please add me if you're there too..
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GREAT!
Add me too then on facebook. Search al-shams :grin
Later
L
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Nice to see some fellow Malaysian on Thalpal. I'm Syaida mother of Adel Rais (3 years old) Beta Thal Major. Adel's condition is much more complicated than both your children. I don't even know where to start to relate the story of my lil guy. Anyway, we are thankful that he has made it this far. I'm glad to say, ever since Thalpal, Adel has improved a great deal. I'd previously overlooked his nutritional aspects. I'm on Facebook, please add me if you're there too..
Hi Syaida...
Great to know you too... like you... I am starting to be more conscious about Adeline's nutritional needs.. btw.. what's your facebook id? You can search me on ann_adeline