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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)

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@mraymond

Yes they tested him for allergies and only thing that showed was that he is allergic to pet dander, dust mites, grass and some type of weeds. He was acting lethargic for about two weeks prior to the trip to the er and he was cold all of the time and had headaches and didn't want to eat much. We thought he was tired from playing outside or either coming down with a cold but he never had fever so we kinda brushed it off. He woke up with a knot on his neck the size of a tennis ball so I rushed him to the er. Those were the only symptoms. Once in the hospital he started having fevers and bad night sweats. They tested and treated him for parasites they all came back negative. They have no idea what is causing his high eosinophils. His eosinophil count got up to 98,000 for two weeks and then they finally gave him the nucala shot. They keep telling us this is a serious condition and it's rare in children his age. The Dr's said they have never had a case like this before and have ran so many test on him because they can't find out what is causing it. He sees an immunologist dr a pulmonologist dr and an oncologist monthly and has labs ever other week to check his levels. I have been reading up on idiopathic hypereosinophilic syndrome but I'm still so confused and worried. We want to know what is causing this and why did it pop up out of no where.

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Replies to "Yes they tested him for allergies and only thing that showed was that he is allergic..."

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.