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Old 01-23-2008, 07:42 AM   #1
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Angry 2 1/2 year old granddaughter has symptoms of Periodic fever syndrome

I am the grandmother of a 2 1/2 year old granddaughter and she has had for the past 6 months fever, knee pain that wakes her up at night she has had many blood tests which come back showing that she does not have Leukemia, cancer, lymes disease etc so our pediatrician always diagnosis it as viral. We end up with giving her motin at least 2-3 days every other week and are getting very frustrated because they keep saying it is viral. Three weeks ago we took her to the emergency room with a fever of 104.5 and knee pain and they gave her motrin and sent her home. She is growing at a normal pace but seems to be sick all the time. We just called today to have her seen by a pediatric Rheumatologist at Hershey Medical Center. I have heard about Periodic Fever syndrome and she seems to experience alot of the same symptoms, and I have asked our pediatrician and he just treats it like it is no big deal but we as her family see that this is not normal. I do not know of any child who at this age is sick all the time and complains her knee hurts. We are at a loss as to where to find the help we need for her.

 
Old 02-26-2008, 05:02 AM   #2
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Re: 2 1/2 year old granddaughter has symptoms of Periodic fever syndrome

my son had his first acute attack at the age of 4 months, later he often complained about the pain in his knees and below the knees. To my great sorrow and surprize he was diagnosed with FMF, the only prevention is colchicine, its dissapointing, but less risky when its rightly diagnosed and prevented, find the right doctor and don't refuse to do genetical analyses.

 
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Old 04-21-2008, 08:10 PM   #3
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Smile Re: 2 1/2 year old granddaughter has symptoms of Periodic fever syndrome

Hi, I was just wondering if they have run SED rate tests and CRP tests. ALso, are her neutrophils or platelets elevated? Does she have a rash? THere are 8 known periodic fever syndromes and several more they are trying to identify fully. They all have different symptoms. THey are still trying to figure out which one my son has, they think he actually has two genetic mutations on different genes, causing two syndromes and that's why they cannot seem to pinpoint which one he has. DONT GIVE UP, it's frustrating and awful, we've been trying to figure this out since he was 15 months, but his symptoms started around 30 days old, he's now 4 1/2. good luck.

 
Old 05-05-2008, 06:06 PM   #4
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Re: 2 1/2 year old granddaughter has symptoms of Periodic fever syndrome

My son was diagnosed with Periodic Fever Syndrome 8 years ago. We too had taken him for every test in the book including the rheumatologist. A doctor at the Children's Hospital finally diagnosed him. He had fevers every 21 days for 3 to 4 years. They ranged from 104 to 106. They offered no treatment at the time. He has eventually outgrown the fevers but does have periodic bouts of tiredness and ulcers in the mouth. But nothing like before. I do have a question though. Is it possible for the syndrome to be in other children within the same family? I have another son with a different father who I believe has the same syndrome. Does anyone know if this is possible?

 
Old 05-06-2008, 01:01 PM   #5
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Re: 2 1/2 year old granddaughter has symptoms of Periodic fever syndrome

No one has found a gene for the form that causes mouth sores yet, but it is believed to be at least partly hereditary.

Get him evaluated.

 
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