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Old Fri Aug 15, 2008, 08:10 AM
Marilinw14 Marilinw14 is offline
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Join Date: Aug 2008
Location: Pittsburgh, PA
Posts: 4
New Member - Need Advice - two children with AA

Good morning,
My name is Marilin and I'm new to all of this. I have a 7 year old who was diagnosed with AA last year. He underwent ATG last October and responded very well. His last transfusion was back in December. We are starting to wean him off the cyclosporin now and he will get his meda-port removed next week. He will be back to school fulltime starting in two weeks. His counts are at 60k for platelets, hemo 9.7, wbc 3.4,rbc 2.83. I'm curious how long it should take to taper off the medicines. The doctor's tell me about 3 months but is this too fast?

On another matter, as soon as we got the good news on Jordan, we found out my older son (9 years old) also has low counts. We are now in the process of doing all the tests necessary to figure out why but we think it may also be AA. I noticed the bruising immediately and we took him and his platelet count was down to 5k. I felt like someone punched me in my stomach and my heart. Too much heartache for me right now. He has gone through two transfusions so far and he is feeling fine. Our biggest dilemma now is that he wants to play football. He is passionate about it and has been crying for days over it. I'm so sick over all of this and I can't believe we will have to go down this route one more time. Any advice about the sports thing?
Thank you.
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