Discussion Forums > Thalassemia Major

can someone help me out?

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Sharmin:
Yes, the tummy symptom is a difficult one to figure out. 

My son has been complaining about headache and dizziness for over a week, as well as tummy ache.  His hg has fallen to 83 in 2 1/2 weeks - suggesting that the antibody is acting up again.

Andy, I will talk to his doctor tomorrow regarding the slow rate transfusion - every two weeks.  Anything to make things better.  I fall apart whenever he is not feeling well - i don't know where to draw strength from right now.  I am so afraid of his hg falling so rapidly and these awful symptoms he is having.  He says that his ears feel partially blocked too.  There is no evidence of cold or flu, i don't know what is going on.  It's been a very difficult day for us. 

Andy Battaglia:
Hi Sharmin,

The symptoms may be related to the autoantibody activity. Talk to the doctor and explain the symptoms your son is having. I won't be surprised if the doctor decides to temporarily raise the prednisone dose. I understand your concerns about prednisone, and shared the same when my son was afflicted with severe asthma when he was young, but now I see a 15 year old kid playing varsity baseball in high school, who wouldn't be alive today without prednisone. My perspective changed from dreading prednisone to thanking God that it was there for him. I do hope prednisone won't be a long term treatment.

It's never easy being parents.  :hugfriend

Manal:
Sharmin, i really know how you feel, i will keep praying for you and your son and i am sure everything will be just fine. Good luck at your visit and please keep us updated
 :empathy
 Manal

Zaini:
Same here Sharmin, :sigh

it's 11 P.M here,and Zainab just came to me complaining of tummy ache,she was asleep at 10 P.M,i don't know what kind of stomach ache is this and what should i do about it ??  :dunno

Another thing,Zainab is also complaining of pain in her ankles since last couple of days,i don't get it when she says "Mama i hear a click and then it starts paining"what could that be?

Could that be realated to desferal anyway?or ferriprox?or calcium? although she is taking calcium and vitamin D daily.

I feel so helpless!!

ZAINI.

§ãJ¡Ð ساجد:
Sharmin, Zaini,

I pray Almighty God that your angels feel well soon.

:empathy

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