Obviously, you have done research, sometimes or maybe a lot of the time, the med professions are limited to their toolbox of insurance approved testing & procedures, then possibly everything else is like living with blinders on.

At this point I could only suggest a deep dive into other cases that are similar and how they turned out, amazingly valued information can come from other (families) who faced similar situations. It's seeking out that kind of info that's work. That's all I got at this point, delving into other stubborn cases and how did they get/got resolved.

My knee jerk armchair gut tells me that somehow environmental pollution had a role somewhere along the line growing up. But I haven't a clue about that, I just am predudice in that regard, ferreting out institutionalized pollution is like, really like fighting city hall. Usually it's a lose lose venture.