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a has had Pfapa since she was three, diagnosed since she was

nine. Her fevers, though lessening (102 tops) and more irregular (8-

10 weeks), are still a big part of her life and fairly predictable.

We are finally having her tonsils and adenoids out this Thursday

(during her finals week, no less, she is in seventh grade). I have

been a recipient of these postings for a long time - but this is my

first posting in a while. We are nervous..is she soon to grow out of

Pfapa because we waited so long?...are we putting her through this

for nothing? The last straw was a four month period of illness and

her negative reaction to Prednisone. Yes, it broke the fever but she

was more lethargic than when she was fevering and we treated her with

advil.

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Was na tested for the other fever disorders??

What do you mean by a four month period of illness?

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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Oh, yes, we went through all the testing at the Westchester County Center for

Infectious Diseases four years ago, when she was finally diagnosed with ,

after

six years of fevers!

What I mean by a " four month period of illness " : What we have found to be a

change

in a's episodes as she nears puberty, is that every episode was

milder...but

longer lasting (5-7 days) and would always end in a sinus infection. So it was

three

episodes, with three mega-sinus infections in four months. We would bring her

to

the Dr. for the episode, then 10 days later for the sinuses, then 5 weeks later,

the

process started again. So even though is not as debilitating as it was -

it is still

causing problems. These sinus infections have been part of the episodes for

about a

year.

> Was na tested for the other fever disorders??

> What do you mean by a four month period of illness?

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

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Oh, yes, we went through all the testing at the Westchester County Center for

Infectious Diseases four years ago, when she was finally diagnosed with ,

after

six years of fevers!

What I mean by a " four month period of illness " : What we have found to be a

change

in a's episodes as she nears puberty, is that every episode was

milder...but

longer lasting (5-7 days) and would always end in a sinus infection. So it was

three

episodes, with three mega-sinus infections in four months. We would bring her

to

the Dr. for the episode, then 10 days later for the sinuses, then 5 weeks later,

the

process started again. So even though is not as debilitating as it was -

it is still

causing problems. These sinus infections have been part of the episodes for

about a

year.

> Was na tested for the other fever disorders??

> What do you mean by a four month period of illness?

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

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,

Thanks for clarifying.

I was thinking the fevers lasted for that long and was concerned it was

another disorder!!

My heart goes out to you... I pray that this resolves now.

The THEORY is that the cycles go on average for 8 years from onset... But

here on the list we have learned that this is not always the case. Hopefully

for the most part it is....

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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,

Thanks for clarifying.

I was thinking the fevers lasted for that long and was concerned it was

another disorder!!

My heart goes out to you... I pray that this resolves now.

The THEORY is that the cycles go on average for 8 years from onset... But

here on the list we have learned that this is not always the case. Hopefully

for the most part it is....

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

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, I mean't to reply to you days ago! Hi, my name is Sandi and my 12

yr. old son is (Pfapa since he was a baby, tonsils out at 5yrs., ) He

cycles almost every 28-30 days, doesn't fever everytime, mouth sores, stomach,

dark eyes, joint pain...But he has had cronic sinusitis for 2 yrs. had surgery

in Oct. 03 (to clean out the sinusis, polyps, etc.) I didn't think it helped a

lot but the new MRI film report say there is " improvement. " He is cycling right

now and his sinusis' are terrible. He suffers severe allergies and asthma as

well. Even his Pfapa dr. feels his allergies are the root of all his evils.

What do you do for your daughters sinuses? Thanks, sandi, Mom to in NJ

Re: in a 13-year-old

Oh, yes, we went through all the testing at the Westchester County Center for

Infectious Diseases four years ago, when she was finally diagnosed with ,

after

six years of fevers!

What I mean by a " four month period of illness " : What we have found to be a

change

in a's episodes as she nears puberty, is that every episode was

milder...but

longer lasting (5-7 days) and would always end in a sinus infection. So it

was three

episodes, with three mega-sinus infections in four months. We would bring her

to

the Dr. for the episode, then 10 days later for the sinuses, then 5 weeks

later, the

process started again. So even though is not as debilitating as it was

- it is still

causing problems. These sinus infections have been part of the episodes for

about a

year.

> Was na tested for the other fever disorders??

> What do you mean by a four month period of illness?

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

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