Some good news!!!

My dear friends,  thank god and thanks to your prayers
my son's hg 1 week post tx today was 132   

We could barely get his hg to 132 immediately after a transfusion before - as the antibodies would begin acting up during the tx. 
I hope he is able to go 4 weeks between transfusions again!  He had an IVIG today and things went well. 

Thank you all for being patient with me I have been such a frantik mess this past year   

I hope this progress continues, the ferritin keeps going down and the hg stays up!   

The doctors from Oakland called us to let us know that they are very happy with the way things are going.  Thank god for them!!  And thank god that our wonderful doctor is so cooperative. 

I owe this progress to Andy and all of my thalpal friends may you all be blessed with joy & good health,
 

Love,
Sharmin

Sharmin,
I'm so glad to read the good news ,I'm happy that our little friend is getting better.I'm also happy for you and your family.

Its good to read that good things is happening.
 
Kathy

Sharmin dear,
I am soooooooooooooooo very happy for you and our brave little soldier.May god bless him with all the happiness and good health.

Hi Sis :
Its great to hear that the little soldier is back to fight again ....
May God bless him with good healthy wealthy and life full of life & joy....
after a long night of suffering , its a new dawn ... soo live this moment completely ..
may god bless you with more good news ... BEST OF LUCK

BEST REGARDS
TAKE CARE
UMAIR

Hi everyone,

Thank god once again - and thanks to your blessings and prayers my son's hg after 3 weeks is 118!! 

It looks like things are good!  If the hg is high again next week we may be able to go 5 weeks between transfusions as we did before the antibody issue.  This also means that his iron levels will drop further! 

Thank you again for your support during our crisis last year!  I wish everyone and their families that best of health and happiness!

Love Sharmin 

In addition Andy, it seems that my son won't need a tx for another two weeks.  The labs indicate that the antibodies are nearly diminished.  His pred dose is being decreased to 5mg alternate days - soon to be taken away completely. 

I am very glad for this because it will give his body a chance to get rid of the iron.  The blood bank is also working on getting him better matched to prevent problems in the future.  Andy, my fear remains the risk of antibodies returning once the effects of the rituximab wears off.  Is there anything else we can do to prevent this?

Thanks,

Sharmin

Hi Sharmin ,
           
   congrats to you and your little soldier
           
 It's nice to hear that Sis .......
 I am realy happy for you and your little Soldier ....

Best Regards
Take Care
Umair

Thats very good news sharmin. :D

Andy, my fear remains the risk of antibodies returning once the effects of the rituximab wears off. 

Praying this doesn't happen anytime soon, coz from what i read, the effect can take as long as 6 months to 3 years to wear off.. Praying for the latter.

Can I ask a question?

These antibodies your talking about. Does he have a reaction when he has a blood transfusion?

If so, well sorry to say that they will be with him all his life... Correct me someone if I am wrong!!!

I have had some major reactions due to blood transfusions and that my body didnt agree with...

I have to have my blood washed and even filtered now so I dont get anther bad reaction too.. Oh I also have hydrocortisone...

Thats how bad my reactions were...

Hope I was helpful, but somone correct me if I am wrong..

Thank you
Take care all..

Hi Smurfette,

The antibodies you are talking about are called allo antibodies - the body produces them in response to markers on foreign antigens. 

In my son's case, as can often occur with other frequently transfused patients, he formed several of these allo antibodies.  His body then created an auto antibody which indiscriminately destroys all red blood cells.  Although my son has never had a transfusion reaction - he experienced increased hemolysis leading to an increased transfusion requirement.  This lead to some iron overload. 

Initially, he was treated with prednisone - but prednisone was not effective enough in slowing the hemolysis.  He was then treated with Rituximab which shuts down the production of antibodies - including the antibodies that were causing my son to have hemolysis.  The process was very very difficult, and we suffered a lot during this therapy.  Thankfully, as a result his transfusions are lasting 3 times as long and the antibodies can no longer be detected in his body.  He seems to be very healthy now. 

At sometime in the future normal antibody production will resume in his body, and our hope is that the trouble making antibodies will not return.  Once shut down, these antibodies need not return, he can have complete remission if we are fortunate.  One way of preventing this (as per our hematologist and most prominent hemotologists such as Dr. Vichinsky) is by better matching his blood through genotype matching - so that the auto antibodies will not be triggered again. 

Therefore, my hope is that the antibodies will not be with him all of his life.  I was wondering what else we can do to keep the antibodies from becoming active again. 

As for your allo antibodies - the first line of treatment is always hydrocortisone and carefully cross matching - or the use of washed red blood cells.  If the problem is very severe then rituximab can be considered.    I would also recommend that you look into genotyping - because in some cases multiple allo antibodies can lead to the development of auto antibodies. 

Good luck,

Sharmin

Sharmin,

Genotyping of the blood is the main thing that can be done to prevent recurrence. It is still only poorly understood why autoimmune disorders occur and preventing and treating various autoimmune conditions is the object of much research. Dr Vichinsky has been heavily involved in this research as it concerns autoantibody reactions in thals. He should be able to give you some insight into the direction this is going. Ultimately, there is a hope that genotyping will join phenotyping for blood matching and incidence of autoantibody problems will be greatly reduced. I think you can probably take some hope in how well your son has reacted to the treatment. And of course, with fewer transfusions it does reduce the odds of a reaction just by lowering the amount of blood received and also does allow more time for matched blood to be found.

A good news indeed  Give a tight hug to your little soldier from me.

Zaini.

Thank you my friends 

Hi little solider
       ur such a brave fighter and your curage in taking all this pain really motivate me in fighting this disease.    i'm ready to kick out this agony and pain forever in my life and cutiepie would always be thankfull to this forum for support it has given us         

      Hope everything's is fine from now on....... Godbless and good health for you and your little angel!