Hello everyone. I have been scrolling down this thread, reading along excitedly and taking notes... and if this thread were a novel, it would be a cliffhanger! I am desperate to know if any progress has been made with the original poster’s condition.

My daughter is now 16 and over the last 5 years her health has been in steady decline. It started out slowly. Maybe just episodes every few weeks... then every couple of weeks ... then every week...until now there is no time ever when she is feeling good. This last year has been the worst. We have had to let her be homeschooled (which has turned out to be *no-schooled*) because she is just too ill every day, all the time. Her chronic nausea and stomach pain is so debilitating; at times she is doubled over, cannot be touched, and sobbing her little heart out. We have had the cameras, the endoscopies, the blood tests, the ultrasounds, the MRIs... all clear. We are desperate. We feel so utterly helpless. We live in London (I have just found out there is a Mayo Clinic here!) - but we would travel home to the USA at an instant if Jacksonville is the place we need to be).

You all are all so knowledgeable and it is a comfort to me that there are still unexplored avenues and untapped resources to get out of this seeming dead-end and save my daughter.

I will comb whatever threads I can find here.