Special Needs

Periodic Fever Syndrome

Hi there, I am new to the board and I'm curious if anyone else has a child with a periodic fever syndrome. My 23 month old has been diagnosed with a periodic fever syndrome, she currently gets sick every 4 weeks. Last month she has a 106.3 degree fever and the doctor wants her to take cholcrys. Has anyone had any luck with the treatment of hyper IgD syndrome?
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Re: Periodic Fever Syndrome

  • If you scroll down a little bit there is a post that says "PFAPA moms".  We're still in the process of determining what DS has. 

    We haven't done any immunology bloodwork yet. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • We suspect my daughter did. She git a monthly fever you could set your watch by. I'd say it lasted about a year from about one until about two. I talked to her pedi about it and he wanted to wait it out a bit (I also talked to my ENT about it a little). She grew out of it before we started trying to actually diagnose or treat it. I think a common "cure' for it is adenoid removal? That's why I talked to the ENT. Her fevers were never that high- more around 100. Bit she was symptom free otherwise. Good luck. It's worrisome...
  • DS started having fevers a week after he turned one. His first fever with no symptoms started on the 4th of July and last 5 days. He had blood work done and his white blood count (neutrophils) was low. He was fine for 2 weeks and then had another fever that lasted 5 days with no symptoms. He was fine for 3 weeks and had another fever that lasted 5 days with no symptoms. Since I had gone to the pediatrican about 8 times during the summer and there was nothing wrong with him except for the fever, they sent us to an Infectious Disease doctor at Children's hospital. After looking at my calendar of fevers, she said he had Periodic Fever Syndrome and that I had to come back during his next fever. She also ran a ton of blood work. The same blood work that an immunologist would run. Everything came back fine. Well,  DS never got another fever so we didn't have to go  back and he didn't have the PFS that she had diagnosed him with. I had the doctor on speaker phone when I asked her over the phone if there was a chance he didn't have it and she said, "He'll be back here within 2 weeks, I'm sure of it".. He never got another fever. We were also sent to a hemotologist/oncologist because of the low neutrophil count during his first fever. After months of blood work, nothing was wrong. It was a very stressful year. He also stopped eating at the time the fevers started. He's now been diagnosed with Infantile Anorexia which may have been caused from the stress of the fevers and all the unknowing.
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