Discussion Forums > Thalassemia Major

Some General Questions

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Zaini:
Hello Rebecca,

Your kids are gorgeous  :wub,lots of hugs and kisses for them, :kiss

ZAINI.

Canadian_Family:
You can give her everything without the fear of its iron contents, however, do not make it regular. Foods that contain iron have other essential nutrients that are helpful for her growth. Try to make it a balance diet as it is for any other child. "Excess of everything is bad though", use your judgement or consult a nutritionist , if you are in doubt.

Ferritin can vary greatly due to several factors and is not a 100% reliable measure of iron in the body, it does give you an indication/approximation at point in time. Don't be too much alarmed about it at this point. Follow the advise of your doctor.

More blood means more stress on her heart, the 70-75 ml seems just right for her age. More blood could give her a longer transfusion time but comes with risk of stress on her heart and as per doctor the risk of stroke.

Not two transfusions are equal, if the packed red blood has greater percentage of young cells (i.e. the age of the cell is young or it is produced recently) then the transfusion will last longer. I don't think freshly donated blood or stored pack would make an impact on the quality of blood.

Scientists have recently suceeded in inventing a technique (I dont' recall the name of the technique) which separates the young red blood cells from the donated blood. Its a costly procedure and not available widely.

Keep asking questions.

EMommy:
Thank you.

We have a solution to the blood quality in December.  We can directly donate our own blood to our daughter, but the blood center will not allow us to do this until we have been home from China for one year.  It is an FDA regulation that really does not make too much sense since she lived in China for 9.5 months.  Neverthless, we can and will donate directly to her as soon as December comes.

Her daddy and I both have the same exact blood type as her and so far she does not have any antibodies and tolerates blood types well.  I can't wait to start giving her our blood because I will donate a few days before and know that it is very "young blood".  Of course, they only allow us to donate so much, so I am not sure if she will always get our blood, but at least some of the time she will.   We can only donate every 6 weeks according to law.  If we both donate at different intervals, then she will usually get our blood.  Has anyone else done direct donation?

How high can her ferritin get before I should be concerned and start some type of chelation?  I really want to keep it low. 

She is such a blessing to us, the very best thing that has ever happened to our family!

Canadian_Family:
People who have selected blood donors are usually more secure from blood transfusions diseases, however, that does not mean others are less secure. The blood safety regimen is highly important issue for all countries and it is controlled very strictly. The only problem though is a new type of blood virus which is unknown and cannot be detected using normal blood screening can be transmitted to thal patients.

Example being Hepatitis B virus scandal in 80's which led to several lawsuits. However, people with selected donor list can reduce the chances of such happening greatly.

Good Luck

§ãJ¡Ð ساجد:
Hi,

According to some Thal. centers in Pakistan, it is not advisable to donate again before 3 months as Thals. require the best quality of blood and it is quite possible that Hb of the donor has not completely recovered. Every center/hospital has it's own standards. Like when I went to Holy Family they didn't care about the blood age and said that it doesn't make a difference, but now at JSF they say that the sooner the blood gets Transfused the better as the cells start to die off when they get out of the body and they tend to transfuse the blood as soon as possible with the least time kept in the store.

Normally the chelation therapy starts at 1000 ng. Better ask your doctor about the time and mode of chelation (Desferal/Exjade).

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