Discussion Forums > Thalassemia Major

BAD NEWS

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Canadian_Family:
We felt for you immediately, we can only comment on the experiences we had.

The low hg may be largely due to the phenoumia he has, please note that under stress the body hg drops faster especially when phenoumia infection attacks, there could be other reasons contributing as well, e.g. exjade and antibodies.

The liver is enlarged, we say wait for few months to confirm that. Our daughter was told to have an enlarged spleen (what really the doctors do is feel the patients from outside and it is only a guess game). The bloating stomach can be attributed as enlarged liver but it can be other reasons as well. Once, his hg comes back to normal you may see the normalization of stomach (Please keep posted).

Has he been transfused recently? (hg of 10 is too low). The ferritin is high, please talk to the doctors what strategy they have since exjade is stopped. Please note Desferal can be used on arms and legs so think about it.

Please keep yourself together, panicking is not going to help Aysam and you. You are doing your best and everything will be fine.

Manal:
Mariam, my dear i know how you are feeling right now and i am so sorry :hugfriend

Is there any chance that you can make this appointment earlier?  What is their point of refusing to do desferal through IV, this is usually done in many places for a quick release of iron.

Siince you stopped the exjade, examine his blood after a week or more and see if the readins differs or not, maybe it is exjade as they say, who knows. Please try to e calm. I will pray for you :hugfriend

manal

Zaini:
One more thing,as canadian family said,infections can lower the hb,infections can also shoot iron levels,that's why it's said that ferritin is not a very accurate measure of iron.When we started chelation for our daughter it was because her ferritin went high as 1750 during a chest infection,while previously it was below 1000.

Be strong Mariam,we are here for you. :hugfriend

Zaini.

Andy Battaglia:
There is a great likelihood that the ferritin readings are not accurate because of ongoing infections. The body stores iron in serum ferritin to prevent infectious agents like bacteria and viruses from using the iron to reproduce. Herpes and pneumonia could both cause higher ferritin readings. Exjade is normally stopped, at least temporarily, if ALT levels rise significantly. This does not mean that Exjade cannot be continued at a later date. Unless there is a proven allergy to desferal, IV desferal would be the best choice right now.

Dori:
your son can't also have desferal with infusions in the veins?
You really should give it a try. That's the only way I could bear desferal.

I feel sorry for you son. Be strong. We are here and maybe there's a chance that you can try an other hospital for a second opinion?

Take care, xxx

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