So sorry to hear about your son’s health problems and your family anguish. What a horrible ordeal to go through. I hope it all works out for you and your son. What a nightmare.
It has stumped many, many doctors. I remember one day last winter 18 doctors from various departments came into his room during the day and they were going to have a conference call with more. Lung tissue samples were sent numerous times to labs all over the country. none could identify it.
Twice while in the hospital he got an additional pneumonia.
It was easily identified and treated.
I remember one oncologist who is nationally renowned, thirty years in the business, an expert if there ever was one, and she told me she did every test she could think of and still didn’t know what this inflammation was or what caused it.
Finally the head of the hematology department came up with a working diagnosis of an autoimmune disease where the body basically goes into hyperdrive and attacks itself. Massive doses of steroids put the flame out. After that, whenever an episode would start they knew what to throw at it and what to watch for..