Discussion Forums > Thalassemia Major
Slow rate transfusion and warm antibody
Sharmin:
Thank you so much Andy,
his hg today was 101. His prednisone dose has been cut back to 25mg for a few days - and then will be reduced further. Our pediatrician suggested that we discuss ritux once we get to Oakland. It would be great to have a break from all of the steroids and frequent transfusions. His ferr right now is 1800 - if his tx requirement is reduced we can bring it back down.
I understand that some patients had a complete recovery after two cycles of rituxmab. With my son also being at the age he is (almost 10) the ritux along with changes in his body over the next few years may take care of this problem. Thank you for the information Andy - I'll bring back as much more information as I can - I know a few of our members can use it.
Andy, would it be helpful if we provide information on the website for newly diagnosed patients to ensure that they have phenotype matching or genotype matching so that they don't end up in our situation? Should other parents have this done for their children even if they have been transfusing for a while? We simply were not aware when we began transfusing our son. Hopefully other parents can avoid this complication.
I'll let you all know how our transfusion goes tomorrow - thanks again everyone - and thank you dear Sajid for your constant support and good wishes:) Your not just an awesome pastry chef - you're just plain awesome:) :hugfriend
Sharmin
Andy Battaglia:
Hi Sharmin,
That's a good level all things considered.
I do think in general we should be pushing for genotype matching of blood along with phenotype matching. It seems practical enough to do and would save patients many problems. Again, I would like to know Vichinsky's take on this. I feel I am getting closer to making a decision about Singapore soon (my worker's uncertain state of health has put me in a holding pattern but hopefully he will have some info later this week) and if I go, I will definitely try to corner Vichinsky again for a few minutes. He is always in such a hurry that he's hard to pin down for long. I am really glad you are seeing him soon.
Singapore is such a long distance from here and quite a costly place, but the outpouring of support I have seen here makes me want to try very hard to get there. I hope I am soon in position to make a decision.
Manal:
Sharmin, i am so happy for the good news, wish you all the best :hugfriend
manal
Sharmin:
Thanks Andy - I'm getting pretty eager to talk to the folks in Oakland soon.
I hope I can offer some positive info and hope for everyone here.
I am eager to reduce the dose of pred soon here too - it's time to begin deflating his ballooning cheeks! He looks like he's storing something in them cheeks.
Seriously, when I see the effect on his face - it makes me wonder if he is having other side effects too.
Thank you so much Manal - I hope things continue to get better. I hope that the new treatment works! I hope all of our little children have bright & healthy futures!
§ãJ¡Ð ساجد:
:blush
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