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-   -   Newbee With Daughter With Saa (http://forums.marrowforums.org/showthread.php?t=999)

speedy0252 Fri Apr 17, 2009 06:24 PM

Newbee With Daughter With Saa
 
My Daughter Is 10 Yrs Old Found Out She Had Saa In March 2005 She Then Recieved Atg Also March 2005 In Feb 2007 Repeated The Atg Due To Counts Bottomed Out And Now 2 Yrs Later Again Starting In Feb 2009 Same Thing Counts Have Bottomed Again Now The Doctor Is Talking About The Bmt. Has Anyone Been Though 2 Courses Of Atg Then Bmt ?? Kinda Scared Concidering She Will Receive A Unrelated Donor And I Have Read It Does Not Work As Well After 2 Course Of Atg. Anyone With Info Please Help Thanks

skoopman Thu Apr 23, 2009 12:29 AM

Hi there,

My daughter was diagnosed with AA, had one round of rabbit ATG and then we went to a MUD transplant after that. Her transplant went well with some complications but she got through all of them just fine. She is currently 3.5 years post BMT with no visible signs of ever being sick.

Where is your daughter being treated? If you have a choice, I would recommend going to a hospital that has experience with AA BMT's.

Please feel free to email me if you have any questions at suzanne_koopman@pacbell.net or check out my daughter's website at www.carepages.com/Michelle5

Suzanne

sandra Thu Apr 23, 2009 11:43 AM

Hi Manessa,

It is true that she is at risk of more complications for the transplat after 2 ATG courses. And, it is not only the ATG, but also the number of transfusions she got so far. However, I second Michelle. In my opinion there are 3 things that can make a transplant a success or not
- quality of the match
- the transplant doctor and the transplant team: this influences everything, which donor is potentially selected, which conditioning regimen, and how the complications are dealt with
- patient support by the family; never underestimate the importance of a strong spirit to fight

So, it is quite normal for you to be worried, but there is nothing you could do to alter the past, so you should focus instead of educating yourself about what to expect. You are your daughter's best advocate!

Sandra

speedy0252 Mon Apr 27, 2009 03:36 PM

Thanks for the replys. If you have anyother helpful information please let me know. She did receive a blood transfusion on Tuesday 4-21-09 this was the first transfusion in almost 2 yrs. Brianna has done well after the previous ATG treatments. She responds to the ATG after 30 days and does not need transfusions after that intill her Cyclosporine has decreased a good bit that is when her blood counts seem to decline. She was down to .4mls 2x aday before her counts droped this time they have since increased the Cyclosporine to .9mls 2x aday about a month ago and no response yet.
I do, do some reseach on SAA sometimes but all I can really do is pray and leave in in the Lords hands. God has brought us to far to leave us now.


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