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Old 03-07-2011, 04:38 PM   #1
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sickgirlm0m HB User
Post 5 year old daughter being tested for periodic fever syndrome

I just wanted to know if anyone out there has dealt with this one before. My daughter has been tested since birth for just about everything. She had a heart murmur, acid reflux, frequent illness, and was labeled failure to thrive. She is sick at least every two weeks, usually consisting of a low grade fever, upset tummy, headaches, and occasionally sore throat. She has been sent from one specialist to the next her entire life. We have now ended up in rheumatology where she is being tested for periodic fever syndrome.
She has had other illnesses that are more severe, occasional rashes, hives, and infections added in. Her illnesses have lasted up to three months at a time and frequently end with some sort of infection, such as pneumonia, when they last that long. She is often given prednisolone to try to help her to get over her longer lasting illnesses, it rarely helps. Her lab tests almost always come back normal, and when they are off it isn't by enough to get a diagnosis. She is very thin for her age and has eyesight problems on top of it. I am now going through a divorce and have no option but to stay home with her because there is no day care that will take her because we do not know if these frequent illnesses are contagious or not. The rheumatologist is farely certain that her diagnosis lies in the periodic fever syndrome. If anyone else has had a child that has had similar symptoms please respond, especially if a diagnosis has been reached. Thank you.

 
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Old 03-09-2011, 11:27 AM   #2
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jenna*** HB User
Re: 5 year old daughter being tested for periodic fever syndrome

Quote:
Originally Posted by sickgirlm0m View Post
I just wanted to know if anyone out there has dealt with this one before. My daughter has been tested since birth for just about everything. She had a heart murmur, acid reflux, frequent illness, and was labeled failure to thrive. She is sick at least every two weeks, usually consisting of a low grade fever, upset tummy, headaches, and occasionally sore throat. She has been sent from one specialist to the next her entire life. We have now ended up in rheumatology where she is being tested for periodic fever syndrome.
She has had other illnesses that are more severe, occasional rashes, hives, and infections added in. Her illnesses have lasted up to three months at a time and frequently end with some sort of infection, such as pneumonia, when they last that long. She is often given prednisolone to try to help her to get over her longer lasting illnesses, it rarely helps. Her lab tests almost always come back normal, and when they are off it isn't by enough to get a diagnosis. She is very thin for her age and has eyesight problems on top of it. I am now going through a divorce and have no option but to stay home with her because there is no day care that will take her because we do not know if these frequent illnesses are contagious or not. The rheumatologist is farely certain that her diagnosis lies in the periodic fever syndrome. If anyone else has had a child that has had similar symptoms please respond, especially if a diagnosis has been reached. Thank you.
My son's issues were not the same as yours, but he did have many problems, in and out of hospitals (in, mostly) from ages 15-24 months old. He ended up being diagnosed with PFAPA (periodic fever syndrome). The best way to determine if that is what it is, is that Prednisone brings the fever down and keeps it down during that episode, but generally decreases the time between episodes. If that IS what she has, a simple tonsillectomy and adenoidectomy fixes it like a miracle! Definitely worth looking into. My son did not fit all the typical symptoms of PFAPA, so the doctors were reluctant, but I had had enough. I can't imagine what you must be going through. We almost lost our son back a year ago on Feb 27, 2010 due to a PFAPA episode, then seizure due to the fever spike, and ended up stopping breathing due to the seizures and landed in PICU. I know how frustrating it can be when the doctors you see (new ones each time it feels like) won't listen to you, and can't figure out what is wrong with your child.

It was due to this message board website that I was able to "diagnose" my son myself and take it to the doctors as an option to research. Trust me, they DON'T LIKE THAT. But you have to be your child's advocate and push the subject even when the doctors don't want to hear it - take it to a doctor who will. I've been through a nasty divorce myself, and I'm so sorry you are going through that as well. But just be persistent. Really, OVERLY persistent, and do whatever it takes to help heal your little one. Your daughter will grow up to respect you more than anyone because of everything you are doing for her right now. Just keep researching and don't lose hope. There are a ton of good people in these message boards that are willing to help you like they helped me. Good luck to you and your daughter and God Bless.

 
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