Discussion Forums > Thalassemia Major

can someone help me out?

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Zaini:
Thanks Sajid  :hugfriend

ZAINI.

Manal:
Zaini, i am sorry to hear this, but what is your plan , are you going to the hema or what?? Since you transfuse the washed blood why is this happeneing? Please update us and give her a big hug for me :hugfriend :hugfriend

Manal

Sharmin:
Manal, Sajid, Andy and Zaini,

I cannot thank you enough for your support. 

Zaini, I hope your little one feels better very soon.  It is so hard to watch your children suffer.

Andy,

The doctor did increase the prednisone dose - he wants to hit him hard with it for a while - 7 days of 40mg and then taper it down slowly.  He also agree to give him smaller transfusions at a slow rate more frequently (every 2 weeks).  His random blood glucose level was also normal. 

The doctor said that he could not see anything wrong with him and told me that he is a very healthy little boy, despite his thalassemia. 

My son however continues to complain about dizziness, aches and pains (which the doctor said were growing pains and very common and normal), yesterday he said that he felt that he would faint.  He woke up this morning saying that he was too shaky to walk or go to school.   I am overwhelmed and don't know what to do -  I am so afraid. 

Andy Battaglia:
Hi Sharmin,

The symptoms your son is experiencing are very possibly related to the autoantibody.

http://www.labtestsonline.org/understanding/analytes/autoantibodies/glance.html


--- Quote ---symptoms they cause are relatively common and may include: arthritis-type joint pain, fatigue, fever, rashes, cold or allergy-type symptoms, weight loss, and muscular weakness. Additional complications may include vasculitis (inflammation of blood vessels) and anemia. Signs and symptoms will vary from person to person. They can vary over time and/or with organ involvement, often tapering off and then flaring up unexpectedly.
--- End quote ---

If these symptoms are related to the autoantibody, the increased prednisone dose should have some effect on alleviating them. Please take some confidence from the doctor telling you he sees a healthy little boy. I would compare the symptoms to those of pollen allergies, where even though a person may be miserable from the effects of the allergy, and seem very ill, it is actually a temporary condition that does not really threaten the health.

Being a parent, I know how hard it is to be patient and am going through an uncertain period myself at the moment, as we await a second blood test for my daughter who has an unexplained rise in white cells accompanied by constant fatigue. It could be just a combination of a recent bad cold along with her tough schedule of university and work, but it also could indicate something far more serious. Because of the cold, it makes no sense to test again until it has been out of her system for a bit, but waiting for an answer is difficult, to say the least.

Zaini:
But Sharmin didn't doctor tell the reason for his dizziness?that's odd,what can be the reason,how's the weather there? is he taking enough water,may be he is not hydrated enough.Can't you start wheat grass juice right now? may be it will help him regain his energy.I hope everything will be back to normal soon . :hugfriend :hugfriend

Thanx Manal,

No i am not planning to go to her hemo,coz she is so arrogant that she'll take no notice,instead i have started to give her herbal water (a strong form of gripe water,if u,ve heard of gripe water),and she has stopped complaining,till now,may be it was only gastric  :dunno

ZAINI.

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