NIH appointment

[Guest guest]

Hi Everyone,

I don't post often anymore, but thought I should share finally

has an NIH appointment. September 6th!!(YEH)

I haven't had to use the big girl stroller much over the past month,

just three times, but it's great when needed.

's school called this morning and wanted to medicate her with

Motrin for leg and back pain. 's EA(educational assistant)was

piggybacking from station to station for today's " fun day " , due

to 's shooting leg pain. (I gave the OK, they've never called for

that before.) She had shooting eye pain two days ago and over the

past few days several c/o abdominal pain.

A year ago when I first joined the group I was posetive " just "

had . (LOL)(The benign disorder.) I could pretty much set the

clock to when she would begin and all her symptoms were generally

what I'd read were textbook . I've been amazed by the evolution

of symptoms over the past year. Now there is little predictability

other than " it " will come whenever " it " wants. The main complaints

from tend to vary with episodes. Thankfully the fevers are not

as high, but many complaints linger long after the fever and present

before the fever. It's been an amazing learning curve for both of

us.I remember our first month in this group had a bout of labial

ulcers during a fever episode, which have occured a few more times

over the past year. I tried to explain the event away as a change in

a household product, possibly causing irritation.(NOT!?) Presentation

of symtpoms were very predictable from 2months to about 4.5yrs old.

I discovered at a Rheumatology appointment two weeks ago the

bloodwork for TRAPS taken in Feb has disappeared and there's no trail

that it was sent anywhere to be tested.

I liked a post I read recently where the term " periodic fever

syndrome " is used to describe the disorder instead of . It's a

nice blanket statement that doesn't allow anyone to fall throught the

cracks. It's the diagnosis in our appointment summary with the Ped

rheum as well.

I'm hoping Dr Kastneer can shed some light on the reality my daughter

triumphs over each day.

Have a good weekend.

Walton

(6) ???

Vancouver Island Canada