I am going to post a couple of links you may find helpful in dealing with the many medical complications with your child. I am so sorry to know you are still floundering looking for the correct dx.
I was hoping someone familiar with the same problems you are experiencing would be along to guide you.
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.
"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."