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Old 10-16-2012, 10:14 PM   #1
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My child was diagnosed with periodic fever syndrome but not growing out of it

Hello, I have a 9 year old daughter who was diagnosed with periodic fever syndrom at the age of 7. She gets random fevers that started around the age of 2. These fevers would get up to 104 and last for several days then just go away. Time after time we took her to the doctors and they said she tested positive for strep throat or tonsilitis. They would throw her on an anti biotic and leave it at that. At the age of 3 we started to become worried these episodes were occurring every month or so so finally we had tonsils and adnoids removed. The problems went away for a short period then started back up again. We were really worried at that point. After starting to see specialist after speacialist at the age of 6 we finally found someone who started doing actual tests to figure out the problem. He was a blood disorder doctor (edocologist I believe). After she was diagnosed he prescribed prednisone and when the fevers hit we would give her one pill at the start of the episode and another if the fever didnt go away. These pills worked for 1 year. Now its to the point where the pills are no longer working, and she is still testing positive for strep everytime she gets ill. So now they say they believe she is a strep virus carrier, along with having the periodic fevers. She has had so many tests done I couldnt tell you, and we are still dealing with this problem. We are sick of sitting on the sidelines and watching our child suffer. We were told she would outgrow the periodic fevers but she isnt, and from the research I have done most children her age have outgrown it, or were misdiagnosed. Her last episode we had blood work and urine tests done again and this time they said they found bilirubin in her urine. This alarmed them which made us worry even more. It seems to us that we keep finding new issues and arent finding a solution to help our daughter. They are trying to tell us now she has mono. She is the most active person with mono I have ever seen. Even when she has the fevers she still remains somewhat active playing with toys etc... I need help finding a better hospital with whom maybe we can share her results with to see if it may be something else or if we are just paranoid. I have read many posts and threads on here regarding this matter and while she shares some of the symptoms she has some others that dont add up. Please any thoughts would be great.

 
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Old 10-17-2012, 02:24 AM   #2
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Re: My child was diagnosed with periodic fever syndrome but not growing out of it

I've just joined but happened to see your post. I wanted to say keep fighting for your girl because there's obviously something wrong that needs medical attention to restore her to health. Get to the bottom of it and harass the doctors if you have to. She just needs the right doctor who will think outside the box.

Personally I was wondering if she has travelled to other countries at all- maybe she has picked up a virus -- Whatever the problem is you need a specialist but it's finding the right one. Just never give up on her.

With all my very best wishes.

 
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Old 10-17-2012, 02:26 AM   #3
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Re: My child was diagnosed with periodic fever syndrome but not growing out of it

I've just joined this forum, but happened to see your post. I wanted to say keep fighting for your girl because there's obviously something wrong which needs medical attention to restore her to good health. Get to the bottom of it and harass the doctors if you have to. She just needs the right doctor who will think outside the box.

Personally I was wondering if she has travelled to other countries at all- maybe she has picked up a virus -- Whatever the problem is you need a specialist but it's finding the right one. Just never give up on her.

With all my very best wishes.

 
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Old 10-21-2012, 02:13 PM   #4
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Re: My child was diagnosed with periodic fever syndrome but not growing out of it

Thank you we try to keep our head up and fight on, we are going up to the Mayo clinic in Rochester MN next week to meet with yet another speacialist. No we havent been out of the country or state really for that matter thank you for your comment and encouragement

 
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Old 11-07-2012, 11:47 AM   #5
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Re: My child was diagnosed with periodic fever syndrome but not growing out of it

Hi There

I have a 10-year old son who has been dealing with some type of fever disorder since he was 4-years old (we suspect he had this as an infant as well). His fevers do not follow a specific pattern, although his fever cycles tend to begin around October and will last through spring (Feb/March). Typically, he will have a low grade fever - between 100 and 101 - during episodes. These episodes can last from 5-7 days, and on some occasions, even longer. No other symptoms other than occasional headaches during episodes.

For years, my son went through blood test after blood test - with everything being normal with exception of elevated SED rate and C Reactive protein: both of these are typical of certain fever disorders.

A fever disorder specialist at San Diego Children's Hospital was inclined to diagnose him with PFAPA when he was 7 (3 years ago). We were also told that he would likely grow out of it. Last year, his fevers went away and we thought that he "grew out" of it. Unfortunately, his fevers have returned over the past 30 days, following the same pattern.

Hang in there and stay on the doctors to make sure your daughter's fever issues are addressed. I know how hard it is, we just have to keep doing our best to make sure their quality of life (and the parent's stress) do not suffer.

 
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