The extreme sensitivity to light and the exhaustion sound like classic
adrenal insufficiency.  Has a cortisol level been checked- don't just say
normal- you must find out the actual level, the reference range for that
lab and the time of day it was done.  Would any of the doctors consider a
trial dose of hydrocortisone (Cortef)?  Try doing a search on "Adrenal
Insufficiency" and see what you recognize.  He also sounds like he could be
hypothyroid although his height and weight make that seem not as obvious.
Often hypo kids don't grow, but that is not an absolute either.  Sometimes
they grow for a longer period of years.

I know you must feel very desperate.  I hope you and your son find the
answer soon.   Nancy

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