A returning member and a re-introduction

[Guest guest]

Hi, my name is and I live in Cold Spring, NY. My daughter, a

will be 16 in

February, 2006. I was a member of this group over two years back until a's

periodic

fevers resolved themselves after a T & A at the end of 8th grade. a was

diagnosed at 9

years and cycling since she was 3. Her cycles averaged around 25 days apart,

lasted 5

days and included high fevers, sore throat and mouth sores. She had a year and

a half

episode-free when she was around nine years old, which was right after we

received her

diagnosis! We finally learned the cause of her fevers, and had a plan of action,

when they

stopped! We really thought Pfapa was gone for good. But it came back, and was

looking

pretty different so that she had maybe three episodes before we realized it was

back.

We had tried the prednisone but it only suppressed her fever, she still had all

the other

symptoms, but she was frighteningly lethargic. a pushed for the T & A, she

was sick of

being sick for every holiday, vacation, recital, girl scout sleep over, etc.

Her episodes

always came faster during periods of high excitement. To give you an idea of

her pain,

when a was wheeled out of recovery after her T & A, she was groggy and tears

were

coursing down her cheeks. I asked, " Does it hurt bad? " She slowly nodded, her

bottom lip

pouted and quivering. Then I asked, " As bad as when you fever? " She thought a

minute

and slowly shook her head, " No " .

She has been fever-free since June, 2004. She is very rarely sick at all. She

is the star of

the Varsity Track team and is healthy as a horse! But there is one problem that

we cannot

find the cause of, and I have returned to this fabulous, giving group, to see if

anyone else

has this same problem.

a got braces on her teeth after we realized the Pfapa was gone. We knew

there was

no way she could have stood the pain of braces during a cycle. Can you imagine

that

combination!?! It would have been like razor blades in her mouth! But now she

has very

swollen gums. We have spoken to her dentist, her orthodontist, and recently, a

periodontist. Her teeth are clean and healthy. Actually, they all say her gums

are healthy!

They are just VERY thick. Her gums were always the first signal to an upcoming

episode.

They would turn bright red and swell the day before a fever. We always felt her

gums were

like her tonsils, a first line of defense. Now they are always swollen.

In june, 2006, she had her gums " sculpted " by laser (OUCH!) and they looked

great for a

couple of months. Now they have grown back! We go back to the periodontist

tomorrow.

I would love to be armed with some info from this group. That was how I was

heard by

her doctors last time!

Thanks for reading, and for having me back.