8 year old with recurring fevers

[gust415]

My 8 year old son has been having fevers for the past year that come every 2-3 weeks. Usually they only get to maybe 102.0 but this past Saturday his fever spiked to 104.1, I was able to get it to come down after some time with cool washcloths and tylenol/motrin. His pediatrician has had him do many blood tests and urine tests, everything is coming back normal except that he has high calcium in his urine.
I need an answer, I am losing my mind. His ped. just says 'well we will wait and see what happens'... how much longer can we wait?

[jo737]

If you also go to Maternal & Child Community under recurrent fevers there is also posts there that might help.

[jo737]

My daughter has had recurring fevers since 10 months old. She is 81/2 now. Back in June after many years of doctors and test she was diagnosed with PFAPA. She now takes Prednisone during her fever episodes. I know I'm not a doctor but if anyone has any questions on tests or symptoms I will try to help I just do not want to see any other child go through what my daughter went through.

[Mainecoon]

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.

[justcake]

Your son needs a complete immunology work-up.  He should definitely see an infectious disease specialist, but he really needs to see an immunologist.

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 :)

[gust415]

I am so sorry that you are going through this as well. I have not found any answers YET. The only other symptoms he gets with the fevers is headache, neck aches, kind of that hurt all over feeling and he too has the leg pains and trouble walking. He is going at the end of this month to see an infectious disease doctor so hopefuly we will find out something. I will keep in touch and let you know anything that I find out.

[rebirth08]

Gust415,
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.