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My oldest grandchild has had recurrent high fevers for about four years. They come every 28 days like clockwork. She has stomach pain, nausea, headaches, muscle pain, over whelming fatigue, and usually vomiting at least once an episode. The good docs (and there have been many) think it is PFAPA or Familial Mediterranean Fever. Her test for FMF came back "fuzzy, positive." Every other test has come back negative. They say they cannot definitively diagnose this, If we really want to know what this is, we have to take her to NHI for bone marrow extraction and spinal tap, plus redo all the numerous tests she has already endured.

Since I was 5, I have suffered from something very similar:
Symmetrical joint pain, often severe.
Fibromyalgia
Chronic oral yeast infections.
Fever – low grade as an adult, high fevers as a child.
Rash especially on lower legs – Dx: one doc says lupus; one says eczema.
Extremely dry eyes and sometimes the mouth.
Cluster headaches that come and go.
Chronic nausea and diarrhea.
Extreme fatigue.
Chronic blood in urine.
Elevated SED rate, low IgG – underwent one year of IgG infusions.

In the past five years, I have been diagnosed with:
Peripheral Neuropathy in GI tract, left arm, both lower legs and feet.
Degenerative arthritis – one knee replacement.
Severe restless leg syndrome that flares every day, asleep or sitting.
Cataracts – laser surgery required on both eyes.
Gastro paresis – hospitalized twice for four days plus.

Past diagnoses doctors have sworn to:
Juvenile Rheumatoid Arthritis.
Encephalitis.
Ankylosing Spondylitis – one nephew has this
Sympathetic Arthritis.
Rheumatoid Arthritis.
Sjogren’s Syndrome.
Lupus.
Mixed Connective Tissue Disease – this is the one I think is correct

My people were Black Dutch, which oftentimes means FMF gene. Most of my symptoms come and go. They have been serious 3 times in my life: age 5, age 30, age 50. The first time, I missed the first grade; the last two times I had to take long leave of absence. (I am a full time, high school teacher.)

I don’t know if this will help you or not. We are desperately trying to resolve my grandchild’s problem, but she has had enough painful tests. I see so many of the problems I have endured for 50 years present in my grandchild. I am past caring what my true diagnosis is; but my daughter really needs to know what Ali has.

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My daughter is 4 years old and we are going through the same thing you are. We are just now going through testing. Her doctors have mentioned the periodic fever syndrom as a possibility but only because I brought it to their attention. It has been about a year since she has had the cycles of fever, stomach aches, leg pain, mouth sores. The doctors thought it was bladder infections and sent us for lots of testing of her kidney and bladder, all which came back fine. Of the testing we have gotten, there seem to show some type of inflamation in the body, and that she has had mono sometime in the past. The Mediterranean fever seems to fit her symptoms, but our family ancestary doesn't match. I refuse to sit back and let this syndrom run its cycle. There has to be something we can do.
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I am the mother of a 5 year old girl who has also suffered from recurrent fevers since she was 8 months old. We have been through the bladder and kidney tests as well because the doctors thought it was chronic UTI's.
Everything was negative. We had a break from the fevers for a little over a year and thought she had outgrown whatever it was but it returned and has been worse then before. Her fevers are coming every 2 weeks or so and seem to be longer and she feels worse. She complains of stomache pain and muscle and joint pain. the fevers spike very high and Tylenol and Motrin do not take the fever away. She tends to vomit about once an episode, though not every one. We are awaiting an appointment with a rheumatologist in a few weeks. They are suspecting a periodic fever syndrome. She has been tested for JRA and other autoimmune diseases and they were negative. She too seems to have an inflammation based on lab results. We are desparate to find out what she has and treat it if we can. Good luck to you too.
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