frustrated

Sharmin,

Sorry to hear that your family had a rough weekend with LittleA's low Hgb....I am happy to hear that LittleA is doing fine now.

Hey,

I have used a calculating thing and in my level is it 3.3 Your must must have feel terrible.

Sharmin, how was the second transfusion today, did everything go well???

manal

Thank you everyone for your wishes 

Manal, we are still at the transfusion.  It is almost complete.  He looks really good today. 
We will be doing various tests - one was done today - one tomorrow and one next week just to see if what happened this weekend was an anomaly because of the flue - or if he is hemolyzing due to the antibody again.  Everyone's prayers are needed again - he has been a trouper through the very difficult treatments he has endured to stop the antibody reactions - I pray that the problem will not re occur.  Please pray that this was just a one time thing 

Thank you all and love you 

Sharmin

Sharmin,

I'm happy to hear that little A is indeed getting his blood today. I hope all went uneventfully.

 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  

manal

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 

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

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    I wish that these pesky auto antibodies would just go away and leave us alone!

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

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.

I doubt the autoantibody ever completely disappears but the goal is to keep it from being activated and this is why genotype matching of blood is so important. Better matching means fewer antibody reactions allo and auto. Just as with an allergy, another immune system response, by minimizing exposure, you can minimize reactions. Once the IVIG and Ritux got his system back under control and protected to some extent, the strategy becomes minimizing exposure to new antigens.

Hi Sharmin

Good to hear that he has been transfused.   I hope that there are no problem with the antibodies.

When there is a dearth of blood, is it possible that you or his father help with that or is it because you are both minors that your blood won't help?

Take care
Jade

Andy,

Thank you for helping me understand. 

Jade, neither my husband nor I are a match for my son to donate blood.  I am O+ and my husband is A-, our son is O-.   
These are our phenotypes - but immediately it tells us that our genotypes are as follows: mine O+O-, my husband's A-O- and my son would be O-O-.  Our daughter is A- and her genotype based on ours is A-O-. 

Sharmin

Sharmin,

I hope antibodies will not re occur,Little A is always in my prayers.This problem of yours has really got me thinking,i am going to present this issue to her doctor,i wish she'll understand what i am saying and i hope the testing is available here .

Zaini.

Hi Little-A ,
Wish you all the best for eveything little A , i hpe you will never face that bad antibodies ( wat ever that was ) ......... my Regards and wishes are with you always ,,, and be sure that u r always in my prayers ..... buddy .... hope to hear many good news from you in soon future like drop in S.fe  and many more ...... you have the courage to ROCK the world buddy , and keep me updating about your score in Ice Hockey ..... 

Best Regards
Take CAre
Umair