I can imagine how frantic you are, especially after all you've been through. I know some very wise folks will be by here who will know where to best direct you--which of the forums are most likely to put you in touch with people who might recognize your precious child's symptoms.
I don't know whether or not you'd like to be in touch with our Sanctuary/Spiritual Support Forum in the meantime. Here's the link, just in case:
http://neurotalk.psychcentral.com/forum27.html
Take care. You & your husband remember to take care of each other during this difficult time, too, you hear? Best thoughts going out to B.J.

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C.G.
. . . . a work still being worked on