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Old 09-03-2011, 10:03 AM   #2
Junior Member
Join Date: Jan 2009
Location: Illinois (suburbs)
Posts: 39
Marley01 HB User
Re: does periodic fever in children go away?

My son was diagnosed with periodic fever syndrome as well. He did not start getting sick until the age of 7. Before that..... I cannot even count on one hand how many times he was sick (with even a cold). We just continued to write EVERYTHING down when we noticed consistancy and they kept telling us "fever virus". He is now 15. For the past two years he has been on 0.6 mg. a day of colchicine. He would take one pill every morning and the fevers stopped. We tried this past summer taking him off the pill to see what would happen and he just got sick again. After two episodes we put him back on the pill. Then we started noticing that every two months he would come down with all of the same symptoms (except the fever)???? and be sleeping for 3 days, just dragged down. Called Dr. Miller of Childrens Memorial who said his body may be getting used to the dosage so now we have doubled the dosage. He takes 0.6 mg. of colchicine in a.m. and 0.6 mg. of colchicine in p.m. Since this, he has not been sick. So for now, with him being so active I don't dare take him off of it being that it works. Don't know what will ever happen when we do decide to try again. I heard the same thing as you - usually happening between 1 and 5. I too was confused that he started at age 7. No, it is most likely NOT hereditary. No one on either side of my our families has anything like this. They said for some unknown reason, he has a mutated gene. The body sees it as a foreign object and wants to attack it. Even though there is nothing wrong with him, that why all of the million of tests came back normal. But the colchicine works to fool the brain telling it "that foreign object you see is ok., leave it alone". All I know, is thanks to this little pill - his life is finally back to normal!!! 6 years we dealt with that - every 21 days!!!!! Best of luck to you!!! Believe me, for the amount of people I've talked to regarding this..... even though they call it rare, it is much more common than people realize. There is an institute in Maryland that is ACTIVELY researching a cure for this. I think its called the Maryland Institute of Health. If you look on the website - for ABC7, Sylvia Perez Health Beats, back in May 2009 I think - - - she did a show on frequent fevers. It explains it further. It was a helpful show.

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