[evansmom]

Hi JoJo,

Sorry to hear about your boy. Jen has made a very good suggestion with regards to contacting Dr. Margolis in Wisconsin. He is one of the best when it comes to pediatric aplastic anemia/bone marrow failure and BMT.
We live in Ontario, Canada, and when my son was diagnosed at the age of 10 in October of 2007, I wrote him a letter. It was a shot in the dark but, like all parents, we were willing to do anything, go anywhere to get our boy better. Dr. Margolis called me the day he received my letter and that opened the door of 'off the record' communication and advice via phone and email that proved to be invaluable to me.

As it stands right now, your son's counts are safe, making immediate treatment unecessary but no one knows when or if that day will come when the last bit of bone marrow function quits and his counts drop, making transfusions and protective isolation necessary.

You do need an absolute diagnosis and treatment plan in place, especially given your son's other health issues.

I want to mention here that there have been links between bone marrow failure and some anti-seizure meds as well as other meds. Has your son's doctor considered this as a possible cause? I realize that you couldn't just stop his meds, but can anything be changed up just to see if anything improves over time?

Best wishes for some answers and a treatment plan.