Slow rate transfusion and warm antibody

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.    
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.   

Sharmin

WOW a Wii !!

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

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

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

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

Hi Sharmin

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

My mother has done the same, but she is a rhumatoid patient and you know this disease is all about antibodies attacking the joints. Any way she did this immune modulation drug where the doctor took her plasma  and prepared a medicne that balances wth the antibodies in her system. Anyway, she feels a lot better now, the most important thing is that she stopped the methotrexate ( chemo pills that is used to hide all her painful symtoms) that she used to take since 2003. Until now she has no symptoms and she is off from the medicne.

I know that this maybe a different situation, but i think the concept of antibodies is the same

manal

Thank you for letting me know about this Manal,  I am also glad that your mother is feeling better
How long has it been since she went through this procedure?  Has it affected her immune system in general? 

I am glad to hear that she is off of the strong drugs and I hope she remains symptom free.  I will give this some more consideration - if it works it will resolve all of our problems - and we'll be back to having only thalassemia (isn't that funny to say - I am hoping for the thalassemia the way it was monthly transfusions and nightly chelation, predicability aaahhhhh those were the days).  All of this worrying can really take a toll, wondering what is going to happen each week. 

Thanks again!! 

Sharmin

You are welcome Sharmin.

Actually, they prepared from her plasma, five small bottles with different concentration. She used to take from bottle one 0.2 ml of it by injection under the skin then the second and third day o.4ml. Then on the fourth day We began with bottle two in the same way. The same happenes with all the bottles till we reached bottle five where she finished all the solution in it. She used to take the injections a day after the other. So it almost took her like a month and half to finish the course.

What she said that she was feeling better each day because her symptoms were disappearing a bit by bit, she felt well . She is thinking of repeating the course once more as she is psychologically feels that this helped her a lot.

The doctor said that this is possible but she should have a gap between the two courses. I hope that she really continues free of her painful symptoms

manal

Manal,

I hope that she remains symptom free, rheumatoid arthritis can be very painful and tough on patients.  If she has felt well so far I am sure the treatment has worked.    Moms are so special, we rely on them so much - especially when our children are sick:)  God bless them all:) 

I will try to get more info about auto-antibodies while I am in Oakland - especially the method your mom has used - I hope the information will be helpful to everyone. 

Sharmin

Good Luck Sharmin, always praying for you
 
manal

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

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? 

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

Dear Sharmin

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

Thank you.

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 

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.