Hi Azgrown,
Welcome to PC

this issue is such a draining and depressing process for all concerned. You have my complete empathy I can only imagine what it is like to go through this for both child and parents.
It seems that with this disorder even though it is psychological in origin there are some issues which need careful approach. I know that from my experience it becomes very much similar to vaginismus an uncontrolled reflex that can take years to overcome. But as with vaginismus the treatments are more physical than psychological even though it is a psychological disorder.
Forgive me if I am wrong, but I presume you have all of the treatments down pat and don't need help in that regard other tham ongoing support?
What pattern of dealing with this issue do you have at present?
Rhian