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Pediatrics Treatment for juvenile patients

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  #1  
Old Thu Jan 6, 2011, 10:05 PM
McBar54 McBar54 is offline
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Join Date: Jan 2011
Location: Vineland, NJ
Posts: 1
The "Roller Coaster"

To all who have posted:

I am a 56 year old grandmother of an 11 year old grandson. He has had
2 ATG treatments for Severe Aplastic Anemia. He was diagnosed in 2009
Right before his 9th birthday.. He had a one year remission... and one year to the day his remission started, it ended.. He is now transfusion dependent and has been put back on the Emergency Transplant list.. He has no compatabile
sibling or family member for BMT. He is full of courage and determination..
After a Benedryl, a platelet transufsion and , general anesthia for a bone marrow biopsey... He went back to school the next day,,, (defying the fact that his previous day's news was not what we had hoped.) He came home that day with "Student of the Month" Award.. (nothing to do with his illness, only his efforts to improve his grades from one marking period to the next.).
I pray every day for anyone afflicted with the "Roller Coaster" fate has sentenced to any family.. All I can do is pray.. (and I do.) for you all.. and your families... I will advocate for support for AA until my dying day.. Michael is my first, and only grandson.. and I only hope I can maintain the tenacity and courgeous spirit that he has surrounded himself with.. Medical technology cannot put this on the back burner.. It is becoming more prevelant that in years past... After all, they did discover a cure for Polio!

Thanks for listening..
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  #2  
Old Fri Jan 7, 2011, 07:42 PM
evansmom evansmom is offline
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Join Date: Nov 2007
Location: Ontario, Canada
Posts: 203
Re: McBar54's post

So sorry to hear that your grandson has relapsed with AA. I want to tell you how wonderful it is that you are supporting him this way, reaching out to those of us who have been there and trying to gain as much info as you can. Good for you. Kids do have a courage and tenacity that far exceeds expectation ~ they are amazing!

My son was diagnosed with sAA just after his 10th birthday in November of 2007. He was a non-responder to one course of ATG and went on to have a successful BMT using an unrelated 9/10 donor (imperfect match) on June 12,2008. He escaped virtually every potential complication and is a healthy growing young man of 13 today.

Trust and hope got us through and it will for your grandson as well.

Evan's entire journey is linked below.

Best wishes for your grandson's return to health.
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #3  
Old Thu Mar 31, 2011, 05:22 AM
pvinod pvinod is offline
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Join Date: Mar 2011
Location: India Gujarat Ahmedabad
Posts: 39
so sorry...god bless him..

what I want to know is him CBC report. why he not got response in 2 round of ATG? Could you please tell me him lymphocytes count number before and after ATG.

does lymphocytes grow back after ATG?
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  #4  
Old Wed May 4, 2011, 11:59 AM
ljensen3 ljensen3 is offline
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Join Date: Apr 2011
Location: Muskegon, Michigan
Posts: 6
Does anybody have info on MAA and what to look for in SAA?

I am so sorry to hear about your grandson. Thank you for sharing your story, there seems to be a lot of support on this forum, and I too am looking for info, answers and support. My 7yo son was just diagnosed on 4/13/11 with MAA and his labs aren't getting better. He also has been taken off his iron supplement because it just isn't getting into his marrow. This has been a struggle because he seems to be getting more tired everyday. He also has ADHD which seems to only complicate this in the effect that he has a hard time focusing and concentrating so it leads him to get more frusterated which his fatigue gets overwhelming for him. I just posted in the "Tell your story" thread and I was wondering if anyone had any info about what the signs are of MAA turning to SAA. I haven't been given much information this. Is it labs? If so does anyone have reference ranges? I am hoping when my son goes to U of M, that I will be given a little more insight.
Thank you
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Leanne, mother of Andrew age 7; diagnosed with AA 4/11
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