@skipper70
Welcome to Mayo Connect, Your family must be going through a very stressful time dealing with your grandson's condition. I hope you hear soon about referral to Mayo.

To answer your question about clinic trails: To see the clinical trails Mayo currently has, this site list all: https://www.mayo.edu/research/clinical-trials . You can search by location and keyword. Another website is the government's site: https://clinicaltrials.gov/

Your providers may be able to suggest clinical trials that are target at you grandson's condition.

How old is your grandson?