Introduction

[Guest guest]

Hello,

My name is Orit, mother to Ariel (18, boy), Ofir (15, boy) and Roni

(6, princess). We live in Raanana, Israel. We are a health oriented

family with no special illness to speak of.

Our pediatrician is suspecting that Roni may have . Here is our

story....

Roni was born a healthy baby - full term. She didn't have any

special illnesses and didn't have her brothers' tendencies for

bronchial or ear infections. She was the strong and healthy one of

the bunch. At about the age of 18 months, she began to spike fevers

every couple of months. They seemed to come right before a family

trip or happening, and we thought they were stress related. As time

went by, I noticed that they came every couple of months, year

round. I turned to her pediatrician with concern and he explained

that she's normal. Did blood work and everything came up normal.

But it didn't sit right with me. Then, about 3 years ago, i read an

article explaining this syndrome where kids get periodic fevers and

negative throats infections. Needless to say the pediatrician

completely canceled all I had to say. And Roni continued to get

fevers every 2-3 months, have her sore throats, get negative

cultures, miss kindergarten, us miss work, and so on and so on and so

on.

And then, last June, Roni had one of her fevers and sore throats and

I decided that i wasn't going to do another culture. I mean i know

the drill, why would it be different this time? But it was. A month

later Roni began to have joint pain and another very high fever and

couldn't even stand on her feet. Yes, Roni got Rheumatic Fever, a

complication of Strep throat. We were hospitalized for almost two

weeks and Roni now has mild Mitral Valve regurgitation (a mild but

abnormal heart murmur). She now has to receive monthly injections of

Penicillin to prevent subsequent strep infections for the next 20

years (!!!). Once we were out of the hospital, after receiving

monstrous amounts of steroids, Roni's fevers began to arrive exactly

every 4 weeks - a week before her monthly penicillin shots. We were

going nuts trying to understand the connection between it all. In

the mean time, i changed pediatricians. And the new one brought up

the word . I then remembered the article from 3 years ago and

we started to try giving her predinsone with the fevers. What we

realized is that the predinsone needs to be given as soon as the

fever goes up to ensure it goes down fast. The more you wait, the

longer it takes to go down. The last fever was Tuesday. I gave her

a predinsone at 19:30 and by 21:00, the fever was down, and her

throat stopped hurting. Magic !

In any case, we now have an appointment with the Rheumatolgy clinic

at the Schneider Children's hospital near by and we will confirm our

suspicions. It is a big shame pediatricians don't know about this

syndrome and are not open to listen to parents. We could have spared

Roni 4 years of suffering by knowing what she had early on.

We are still new to all of this and I would appreciate any tips, help

and support you all have to give. And of course, I will be more than

happy to reciprocate to anyone who needs anything.

Orit