Oh I am so sorry. Yes I was told that when they can’t figure out the cause they label it HES. I have been told it is a rare condition and of all the doctors I am seeing I am their first ever HES patient. I heard Nucala is a good drug to lower EOS I am trying to get on it but I have to be diagnosed for six months before I’m approved. So I am on prednisone to keep my levels normal.

As you are I am reading a lot but nothing seems positive about it and there is no good reason given for it to happen. The danger with high EOS is the damage it can cause to our organs. Which is why it is so important to have the EOS controlled. It does for some unknown reason pop up out of no where which to me is so strange. My very thick file was sent to a conference about a month ago where the attendees reran all the bone marrow testing and reevaluated what caused the elevation. Other than coming up with no cancers(thank the good lord) they had no diagnosis other than possibly HES.

I pray your grandson and you find answers and hope that it remains stable with nothing further that happens. Nucala should do that for him.

If I find anything out that could help you I will share. Keep strong.