in response to @elynnbish I am so sorry to learn about your son's condition, one that I share. I am sure your son's hematologist would be able to help him with his condition, which I understand can be confusing, complicated and frustrating. Fortunately I have not had any complications yet, but nonetheless am concerned about the diagnosis which I understand more than I can explain. I have many of the same problems as your son, and while I am frustrated by the lack of understanding among my doctors, I try to do the best I can. However, I am much older than your son, and can only imagine how he must feel with all of the tests, symptoms and things of that nature. I hope that you are able to get him the care that he needs, and that will also ease your own mind.
Be well