My 9 year old has been suffering with high fevers 103/104, severe muscle/joint pain, stomach pain, nausea, and now a rash since she was 3/4 years old. We saw her pediatrician numerous times and were always treated for UTI's or written off as viral, but she was taking so much unnecessary antibiotics that I had enough and wanted answers. So, we saw a pediatric immunologist at Childrens Hospital and finally got answers. She was diagnosed with TRAPS syndrome, also known as Hibernian Fever Syndrome. Our problem now is trying to find a doctor that has knowledge about this disease. Maybe you should see an immunologist and ask that your daughter be tested for TRAPS.
Does your nephew have any other symptoms or just high fever?
My 9 year old has been suffering with high fevers 103/104, severe muscle/joint pain, stomach pain, nausea, and now a rash since she was 3/4 years old. We saw her pediatrician numerous times and were always treated for UTI's or written off as viral, but she was taking so much unnecessary antibiotics that I had enough and wanted answers. So, we saw a pediatric immunologist at Childrens Hospital and finally got answers. She was diagnosed with TRAPS syndrome, also known as Hibernian Fever Syndrome. Our problem now is trying to find a doctor that has knowledge about this disease. We need a pediatric rheumatologist and can't seem to find anyone that knows much about this rare disease. If you have any suggestions/info. please let me know.
my nephew is almost 3 and has recurrent fever days on end and doctors have been saying to take moltrin nearly everyday for the fever. he once had the fever in school and then started convulsing for about 15 seconds, a blood test found high WBC, and neutrophiles and decreased RBC (anemia).... now doctors are suggesting a gene test. does anyone have a thought on what could be causing these fevers?
We noticed our daughter at 10 months getting recurrent fevers she is 8 1/2 now still getting fevers every month. After many long years and lots of antibiotics she was diagnosed with PFAPA. She also was treated many times for strep because of the white spots on the back of her throat, never had strep. When she was 5 she had Adnoids and Pansinusitus surgery. She is taking Prednisone during fever episodes. Her Immunologist checked her CRP levels during her fevers and that was one of his clues for PFAPA.
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.
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.