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Our son is now a month away from being 3 years old and has been getting high

fevers for over a year. He gets sick every 15 days with fevers ranging from 102

to 105.5, sometimes vomiting, sometimes diarrhea and weakness. He has had

several blood tests all coming up negative besides the ones that are an

indicator that levels are too high or low. He has had a bone marrow and spinal

tap to rule things out, several mri's, eegs and cat scans. They have found him

to have a cyst on his brain and his lymph nodes and tonsils are swollen. He has

been hospitalized 3 times since birth. Twice for his fevers and dehydration and

the first time when he was 2 months old. He lost consciousness and had a

seizure when he came to. They said it was from acid reflux and lack of oxygen.

Since then he has had 4 more seizures with his fevers. We have taken him to a

children's hospital where they too were stumped and could not tell us what was

wrong with our son. Just this weekend he had

105.3 fever, vomiting, diarrhea and sore in his mouth. I took him to the

hospital and the peds doctor (that we had seen before in the hospital) had heard

of and researched it and diagnosed our son with it. I came home from the

hospital yesterday and looked it up and it sounds exactly what he goes through

every 15 days. I am looking for a doctor that I can have my son go to that

actually works with the syndrome rather than doctors just guessing. We are glad

they have started him on the prednisone but we are looking for more answers and

ways to make him feel comfortable. We are tired of hearing from doctors all

they can do is tylenol and motrin and wait out the virus. What virus they could

never tell us. I am grateful to this doctor that had heard a lecture on this

just recently and that God brought us back to him again.

We live in Champaign, IL and if anyone knows of a specialist that we can go

see please let us know. We live close to St Louis, MO, Chicago, IL and

Indianapolis, IN.

Thank you for listening to our story and if you know of someone that could

help our son please email us at cherokeejl@...

and Hodges

---------------------------------

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