New Member Introduction

[Guest guest]

Our experience with periodic fevers has been fairly recent, but it’s amazing

the toll this illness has taken on our lives in this short time. But, I’m so

grateful for this group—if any one can figure something out like this, it’s the

parents!

My 8 year old son Ethan’s fevers started with a bout with strep last

February (or at least I think so—now I’m wondering if all the times he’s been

sick if it’s been connected). He had a pretty high temperature and tested

positive for strep in the ER. The first antibiotic didn’t knock it out, so he

took another one (z-pack first and then amoxicillin). 24 days later, he was back

at the doctor, but this time, the quick test and the culture were negative.

Since then, he has fevered around every 28 days (give or take a few days) and he

always tests negative for strep. His only symptoms are the fever, paleness, loss

of appetite, headache, enlarged/red/white covered tonsils, and a white coating

on his tongue. My dr. finally got to see him on the first day of a fever this

last time, and she said that his throat was abscessed. There is one other thing,

though: right before his second to last cycle, I noticed Ethan’s salivary gland

was in over production and that hasn’t changed

(he has the need to spit a lot). Has anyone else seen this?

I was impressed with how quickly his doctor recommended an immunologist and

how they both are thinking (they don’t think it’s cyclic neutropenia,

although he’s only done blood work 3 times now)--it's relief not to have my

worries dismissed. His blood work when he’s not fevering is normal (except for

borderline low hematocrit), and at the end of a cycle, his sedimentation rate

was 27. We’re going to test for HIDS this week, as well as do some xrays and a

ct scan. We’re waiting to see a pediatric immunologist in August (it’s horrible

having to wait), and I’m thinking we need to find a good infectious disease dr

in the Dallas/Ft. Worth area, too.

Ethan also has food sensitivities (corn, wheat, rice, oats, barley, and

rye), has been diagnosed with speech delay, ADHD, sensory issues, dyslexia, and

motor skill delays. In the brief time I’ve had to read the other posts, I’ve

seen a few other parents mention some of these issues, and I’m wondering if it’s

coincidental or if there’s a connection.

I'm also wondering: Has anyone else’s child started fevering as late as

mine? And when they are between fevers, do they stay a little pale and have a

lessened appetite? It seems like my son’s eating patterns have changed, but I

can’t be for sure. He’s not losing weight—he’s a sturdy 95 pounds—and he’s on

target for height. For those with mouth sores, how long does it take for them to

go away after a fever? Do your children get sick with other things, too?

Thank you so much for letting me tell our story and ask questions.

Denton, Texas

Ethan 8 (fevering since Feb. 2008)

Eloise 6 (speech delay and possibly dyslexic)

Hugh 4 (mild speech delay)