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Manal:
 I am happy that he looks good today Sharmin and i am sure that he will do good too in the tests. Please keep us updated. Little A is always in my prayers  :hugfriend

manal

Sharmin:
Andy & Manal,

Thank you.  I am glad that we were able to get his transfusion today as well.  His doctor really wanted him to get the transfusion and the various tests, I am very glad about that.  Thank you for the support Andy - it gives me the strength to be persistent so that Little A gets the care he needs  :hugfriend

Thanks again friends, I will let you know what the tests indicate,

Sharmin

Sharmin:
Andy,

I am a little confused about one thing.  For that last couple of months I have been noticing that the warm complex antibody is still detected when he is cross matched.  The doctor is not surprised, and generally little A's tx are lasting longer than before, even without prednisone. 

Is the rituximab just supposed to decrease the production of antibodies, not irradicate them?  We are also getting genotype matched blood now - although would have been best if we were getting it before all of these problems ever occurred - I am hoping that that will prevent the antibodies from becoming to aggressive. 

I am not sure of what to make of this.  I suppose that I thought that the antibodies would not be produced anymore after the ritux treatment  ??? ???

For now, I am just hoping that the antibodies are not present in large titers and that they are not as active as they once were.  I actually hate the word antibodies now  :raspberries  I wish that these pesky auto antibodies would just go away and leave us alone!

Sharmin

Sharmin:
Little A had his transfusion.  He received 480cc on Saturday and another 520cc today.  We will find out tomorrow what his hg is now at. 
I have another question Andy - we have a SQUID booked for next week - would this enormous transfusion increase his ferritin levels?  We have been chelating a little extra (desferal 7X rather than 5X a week this week) and we will continue to do this in this coming week. 

Thanks you,

Sharmin

Andy Battaglia:
Sharmin,
He should be taking desferal tonight. This is a good practice for every transfusion. This will help reduce the amount of free iron circulating. I don't think a short term event would be reflected in organ iron measurements. It normally takes years for iron to build in the heart, but some extra chelation this week will still be a good idea.

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