Discussion Forums > Thalassemia Major

Slow rate transfusion and warm antibody

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Sharmin:
Hi everyone,
my son's hg was 98 last Thursday - he received on bag - and this morning his hg is 110.  We will go in again for another unit tomorrow.  It is nice to keep him up this high because he is energetic and happy.  We'll keep giving him this small volume weekly for a while and see how he does - this is sooo much better than the ups and downs we were going through before.  I can't imagine that would be very good for the heart either.  This is more stable and the changes are small and slow - thanks again for all of your research Andy - our doctor has been going through it in the last week or so, we'll discuss it with him tomorrow. 

Thanks again everyone,

Sharmin

Sharmin:
Andy,

I am noticing lately that the blood bank usually takes some time finding matched blood for my son - it has happened a few times that it took them a day or so to find blood.  He will be transfused tomorrow, but we received a call this evening that we should go in later in the day because the blood bank does not have blood for him yet.

Right now he is 110, and if the transfusion is delayed by a few hours or even a day it is okay.  My concern is, what would happen if he were in an accident and lost blood - now that he has 7 allo-antibodies - what if they were not able to find matched blood quickly? 

Can you help me with this? 

Sharmin:
Hi everyone,

My son's hg dropped quite rapidly again to 78 - his doctor will be increasing his prednisone to 50mg a day for the next two weeks.  We'll need all of your prayers and hope things go well - and this awful antibody stops chewing up all of his blood.  I am so glad that our appt in Oakland is right around the corner. 

Sharmin

omega:
Dear Sharmin

50mg per day is a high dose. Hope this will not go on for long.

Thank you.

Sharmin:
Thanks Omega,
Yes, it is a high dose, for now the dose will be required for 2 weeks and then he will be weaned off. 

I am so afraid of where this is all leading - high doses of prednisone - and when he is tapered off the antibodies comes back stronger than ever.  I feel so helpless  :wah

I have been reading a little bit on plasmapheresis in hemolytic anemia - maybe this can be an option for us rather than ongoing steroid use. 

Maybe, if conducted properly plasmapheresis can be helpful to others who suffer from antibodies - but only with extreme caution and consultation with professionals. 

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