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Pediatrics Treatment for juvenile patients

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  #1  
Old Tue Mar 22, 2011, 12:20 PM
kellym kellym is offline
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3 weeks post atg..waiting begins

Hello, ellas finally finished the atg, we had nearly a month hospital stay in the end, she had some serum sickness, she had the rash, aching bones, two infections, and a few high temps, but she did really well and they looked after her brilliantly. The two weeks on steroids was "fun" I had a constantly hungry and grumpy child lol, but her good nature has now returned!
All her blood counts are worse than before, theyve been up only a tiny bit then down again, she has no neutrophils at the moment and we are off for platelets later.
They told me this is normal, but the wait to see what happens is so hard and being in the hospital with no other patients that have aplastic was hard as no one really understands.

Hope your all winning the fight!
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Kelly, mother of ella aged five; diagnosed dec 2010 with saa. Had rabbit ATg on 23 feb 2011...now waiting
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  #2  
Old Tue Mar 22, 2011, 03:19 PM
mscrzy1 mscrzy1 is offline
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I know it's hard to not obsess about every single cbc. AA is the worst disease for us type A people to get or have a family member get because we feel so out of control and being patient just drives us nuts. But, try your hardest to keep the faith. I went an entire year before seeing ANY type of stabilization or increase in my counts, but eventually my body did turn around. It may take time, but it can happen...even a year post-ATG.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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Old Mon Mar 28, 2011, 01:14 PM
kellym kellym is offline
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I'm glad it worked for you
It is really hard not to get worked up by every CBC..she had another today and nothings improved at all, it's even worse than before, it's all so upsetting, i would just a little bit of good news. It's so hard waiting.
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Kelly, mother of ella aged five; diagnosed dec 2010 with saa. Had rabbit ATg on 23 feb 2011...now waiting
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Old Tue Mar 29, 2011, 08:23 AM
Karenish Karenish is offline
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Smile Hang in there!

I finished my rabbit ATG last week and got through it relatively unscathed, but recent blood test shows platelets down to 19 so have to go in to clinic tomorrow, at first I burst into tears thinking it hasn't worked, but then remembered that we are all different, and sometimes it takes a while for the marrow to kick in and not to be so hard on myself. It is difficult (I am an occupational therapist) trying to be positive, but we are all unique individuals and as such will respond differently too. ATG takes a while to leave the system and it does destroy platelets which is why they tend to tranfuse you daily then every other day. My nutrifils kicked in very quickly so something must be working? But I do not have the other results to see if anything else is, on the humour side of things, I may be tired but at least I have a first line of defense with little infections. Try to take one day at a time, I find this helps, good luck xxx
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Old Tue Mar 29, 2011, 02:11 PM
kellym kellym is offline
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Hi again, thankyou for your lovely message.. Im trying to keep as positive as I can, I have up and down days like everyone else proberly does, I bet your training helps you to keep positive!
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Kelly, mother of ella aged five; diagnosed dec 2010 with saa. Had rabbit ATg on 23 feb 2011...now waiting
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