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Old Tue May 7, 2013, 03:32 PM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hi again Bolinger,

I agree with most of the comments posted here as far as all the testing that is required and the fact that you should keep copies of all tests/labs and results.

From the information you've shared, I assumed your child had been diagnosed with either Severe or Very Severe Aplastic Anemia (SAA or vSAA). It should have been classified as either an Identified Source e.g. Hepatitis, Idiopathic (Unknown Source) or Genetic Form e.g. Fanconi etc. To the best of my knowledge these tests for classifications were done prior to treatment with ATG.

Regarding the use of Growth Stimulator(s), more specifically WBC stimulator GCSF such as Neupogen. Back in 2004 when my son was diagnosed; it was part of post ATG Protocol. At least most of the people (parents) I spoke to back then and a bit after had mentioned a short course of Neupogen as part of their child's post ATG protocol. I fully understand that might not be the case any longer as there was controversy as to whether or not it was beneficial.

With AA, you really have to be patient and take it one day at a time. Do the best you can for yourself and your child on a daily basis. Slowly, but surely changes will come about. Keep a journal and jot down your thoughts, daily occurrences, questions for the doctors or even questions for us on marrow forums.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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