Discussion Forums > Thalassemia Major

BAD NEWS

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aysam:
yes she did and i have a appointment in nov
but no they said they wont do the iv
why i dont knowandy what to you hink about what is happeing

maryo0m:
Hello aysam,

I know the answer to your results, the same thing happned to one of the patients here in kuwait arround aysam's age  and she started having liver problems too and her iron level got higher not to mention fainting and discharge from her mouth while fainting, I dont rely on doctors really , her mother was so scarred she called me at night and I did my research it turns out Exjade doesnt work with all ages some childrens body cant hel to have it in them there for the body re-act  in a bad way towards it....

when I printed them and showed them to my doctor he tolled her to stop exjade

so plz  do stop it   :console

helenkol:

 :dunno
Similar situation has happened to me enough times for different reasons and………….I’m still here.
The main reason is exjade. Stop it.
You don't worry for iron level. You can try Desferal or Ferriprox.
It is a small haemolysis .that is a reason Hb falls, he is pale, high ALT.   
Transfusion reactions and antibody related haemolysis. Τhe control with coombs test for antibodies
 is a simple examination.
Check also  hepatitis and spleen.

Don’t panic, be cool    :hugfriend

Sharmin:
Mariam,

Yes, I also recommend the coombs test.  I don't think that the hg drop is large for a child who has been sick, and in conjunction with some of the other difficulties right now.  I can see that his ferritin is very high and the doctors that Smurfette recommended to you will need to determine the chelation plan that your son needs to be on.  November is around the corner - the chelation that goes on before then is negligeable.  It is his long term well being that is important.  It is too bad that he cannot use desferal. 

Are you giving him IP6?  It will provide some protection while you await your appointment.  One family was giving it to a young child (as the capsule is difficult to swallow) - by opening the capsule and dissolving it in water. 

I am continuing to see what else I can find out for you.   

Your son will be okay, as several others have said here that they have been in similar conditions.  Aysam is going through a rough patch - but he will come through this.  Perhaps once he is older he will be ready for different forms of chelation - for now they need to determine which is best for him at this age.

I will talk to you again soon,  take care my friend

Sharmin

Zaini:
Mariam,

Dear i can totally understand your fears,but please try to understand that if you'll get panicked,who'll help aysam?

You said you have an appointment in nov,till then you can stop exjade? and then ask that new doctor if you can try it again? and mean while watch if his levels get to normal,Desferal IV is the best option for lowering ferritin.I believe L1 is also available in Austrailia,but i don't know about the age limit,but keep in mind that L1 also have some side effects,but my daughter is doing well with L1 Alhumdulillah.

I hope aysam will be fine soon,please keep in touch with smurfette as she is very knowledgeable and she knows about the conditions and facilities available in your country.

Zaini.

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