Discussion Forums > Thalassemia Major

Slow rate transfusion and warm antibody

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Sharmin:
Thank you Sajid, your support (and everyone else's) brings tears to my eyes.  Thank you for your prayers.  I will keep you posted.

The little munchkin is actually glad that he is going in more often these days - they have Nintendo Wii for him to play - so he gets to miss school and play Wii instead.  He thinks it's party time every week, in fact in his 'humble' opinion he told me that this is indeed the best plan.   :happydance 
I'm sure he would feel differently if he were older. 

Thank you again everyone, I pray for your good health and well being too Sajid  - and all of my wonderful friends.   :grouphug

Sharmin

§ãJ¡Ð ساجد:
WOW a Wii !!

Now I wanna come and join the fun with him every week :wah :biggrin

Manal:
Sharmin, i am so happy that he is feeling this way. Actually i know that this makes you feel some how releaved and comfortable, i know what our children think and feel and how they take things makes alll the difference to us. Hope he will always enjoys his life .


Sharmin, are these antibodies  going to last or they should be limited and thus stopping the prednisone. What is the plan to avoid this happening again in his future??

manal

Sharmin:
Hi Manal,

These type of antibodies behave differently in everyone.  In some people they are transient, as the doctor had hoped with us and in some people they become chronic.  We are hoping that with the right treatment perhaps we can suppress them. 

There are a few ways to take care of the problem, one is to manage it as we are doing for the time being - a certain dose of pred, slow, small volume transfusions more frequently.    Another method is one in which the patient is exposed to very high doses of prednisone periodically, after a few cycles of this 1/3 of the patients will be completely free of the antibody problem.  This is great for the 1/3 of patients it works on - but for the other 2/3 are unnecessarily exposed to massive quantities of steroid with no benefit.  There are other methods, such as introducing an antibody against the particular antibody which is causing the problem, to the patients body to scavenge and eliminate the problem causing antibody - Andy do you know anything about this?  Can it be harmful to the immune system in general? 

The hope is that with normal changes as the child grows that perhaps the antibody just - goes away - or becomes less of a problem - and in most cases that is what happens during puberty.  In the odd case, the problem could become worse but we are hoping that things won't go that way.  My son will be 10 in a few months, so we are hoping for some positive changes soon.  Also, we are hoping for something more positive from our Oakland visit.    Perhaps if my son were to be on Hemaquest in the near future (if it is as effective as we hope, and it is an avenue available to us) maybe the antibody will become less active - as he won't be exposed to massive quantities of foreign blood. 

I suppose that there is hope, for now the only problem has been more frequent transfusions - but his ferritin levels have not been too bad - his desferal was just recently increased so we are hoping for it to improve further.  With some good advice, and a lot of prayers I am hopeful that everything will be okay.   

Thanks for your constant concern and support Manal, 

Sajid - you are welcome to come play Wii anytime:) 

Sharmin

Sharmin:
Andy,

Our transfusion was on Tuesday - only 1 bag (less than 15cc/kg) - the hg before tx was 78 - this morning his hg is 98 - and we are txing again tomorrow.  I am hoping that tomorrows tx will get us high enough to last a week.  Perhaps another possibility is to tx two consecutive days - 1 bag each day - and hope to go back in 2 weeks.   I guess it is a matter of seeing what works. 

Sharmin

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