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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 painfulPainful menstrual periods 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.
I'm just seeing this now 2 months after your post - wondering if you've found anything out? I have a 4 year old with EXACTALLY the same problem and we've had EVERY TEST under the sun done an NO ANSWERS.
When he spikes his fever does he have any additional symptoms? My little guy will get stomach pain and puke once or twice and refuses to eat for DAYS - gets REALLY tired and irritable and says his body HURTS particularily his legs and he has difficulty walking when he's got the fever.
I can always the tell the 24 hours prior that he'll have the FEVER the next day cause he gets really grumpy and extremely exhusted.
I've seen many posts like yours and that similar to what my little guy is going through and no one seems to have any answers from the medical proffessionals.
Hugs to you as I know how upsetting and stressful it can be...it breaks my heart when my 4 year old wants to know why he's sick all the time and I have no answers.
While you're waiting for an appointment, you can ask your PCP to order basic immunology blood tests--Ig levels and sublevels, T and B cell panel, etc.
I'd recommend reviewing some of the community boards of people with "CVID", or any kind of Primary Immune Deficiency organization for some ideas for blood tests and other kind of things you can do.
I hope everything works out :)
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.