Re: Re:Older kids with

[Guest guest]

How was your daughter diagnosed...and how long ago?

All the other children I've read about were very young

when they started having fevers... was ll when he

started.

Also, you mentioned...your daughters fevers stoped 2

years ago, and recently started back up again. s

ID doc. told me that in general...there were three

times that spiked...around 5-6months, the start

of puberty, and again at the end of puberty. I'm not

sure what he meant by " spiked " ...but your daughter is

around the age of starting puberty...maybe that's why

she has started fevering again. Again...I would sure

like to know of ANYONE who has OUTGROWN !!!

We all are told our children will eventually outgrow

this mysterious illness...but do they really??? Please

let me know what her doctor says. Have you tried

prednisone? It has been great...so far...for .

Cheri, 11

--- kelbellefl <KelBelleFL@...> wrote:

> Cheri, my daughet will be 12 in a few weeks and so

> far she's the only

> I know that is as old as she is and still with

> . We stopped

> going to our doctor because the fevers stopped 2

> years ago but they've

> started again this past Spring. We made an

> appointment next Wednesday

> with our doctor and I'll let you know the results.

> We too thought she

> finally 'outgrew' it, and were at a loss when the

> fevers came back. We

> are considering a tonscillectomy.

>

>

> >

> > > Hello Everyone,

> > >

> > > I haven't been on the board in quite a while

> because

> > > I thought my

> > > daughter had outgrown but not I'm not so

> > > sure... is 10

> > > years old now and was diagnosed with at

> age 6

> > > - she started

> > > fevering with tonsils, etc. in kindergarten

> right

> > > before she turned

> > > 6 and a year later was diagnosed. Six months

> later

> > > she was on

> > > Cimetidine for 1 1/2 years and did great -

> basically

> > > no fevers thru

> > > second grade while she was on it and the end of

> > > third grade when she

> > > was off.

> > >

> > > Last year, in October of 4th grade, she spiked a

> > > fever and had " the

> > > look " around her eyes and huge, pussy tonsils

> again.

> > > Then again it

> > > started more regularly but the fevers aren't as

> high

> > > - 100 to 101.

> > > But the tonsils (left in particular) are huge,

> red

> > > and full of puss -

> > > and cover half her throat. She's now in her

> third

> > > episode in 4

> > > months - beginning May, July and September.

> Since

> > > she can basically

> > > function in school (when it starts on Wednesday)

> and

> > > since the fever

> > > is pretty low, we can deal with that part, but

> it's

> > > the tonsils that

> > > are a major problem. She can't really swallow,

> > > sounds like she's

> > > got something caught in her throat, and is

> pretty

> > > miserable about

> > > this all starting again. She's involved with

> > > community theatre and

> > > has an audition coming up in a week that she

> needs

> > > to be able to

> > > sing for and the tonsils make it kind of

> difficult.

> > >

> > > Now my questions --

> > > Do we try the cimetidine again? Anyone with

> > > experience trying it

> > > again after a relapse?

> > >

> > > Do we start to think more seriously about a

> > > tonsilectomy? I

> > > happened to look at her throat fairly regularly

> the

> > > week before the

> > > latest episode because she has a molar coming in

> > > that she wanted me

> > > to see. The tonsil is ALWAYS larger than the

> other

> > > one and you

> > > could still see the pits in it. It covered

> about

> > > half her throat

> > > before it became enlarged (more ) again. Does

> > > anyone have

> > > experience with an older child having a

> > > tonsillectomy?

> > >

> > > Do we try the prednisone again? I don't really

> like

> > > the short term

> > > answer when her tonsils are staying enlarged

> over a

> > > long period of

> > > time.

> > >

> > > Any thoughts and ideas would be really welcome.

> > > I'll be calling the

> > > doctor tomorrow to get her seen and see what she

> > > recommends!

> > >

> > > Thanks,

> > > Armstrong

> > > Mansfield, MA

> > > Mom to (10 - ) and Alec 13 1/2

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

My son is 23 yrs old and still suffering from the symptoms of .

He started at age 4 months and was not diagnosed until he was 7 yrs old.

Kathleen

On Sep 6, 2006, at 12:38 PM, kelbellefl wrote:

> Cheri, my daughet will be 12 in a few weeks and so far she's the only

> I know that is as old as she is and still with . We stopped

> going to our doctor because the fevers stopped 2 years ago but they've

> started again this past Spring. We made an appointment next Wednesday

> with our doctor and I'll let you know the results. We too thought she

> finally 'outgrew' it, and were at a loss when the fevers came back. We

> are considering a tonscillectomy.

>

>

>>

>>> Hello Everyone,

>>>

>>> I haven't been on the board in quite a while because

>>> I thought my

>>> daughter had outgrown but not I'm not so

>>> sure... is 10

>>> years old now and was diagnosed with at age 6

>>> - she started

>>> fevering with tonsils, etc. in kindergarten right

>>> before she turned

>>> 6 and a year later was diagnosed. Six months later

>>> she was on

>>> Cimetidine for 1 1/2 years and did great - basically

>>> no fevers thru

>>> second grade while she was on it and the end of

>>> third grade when she

>>> was off.

>>>

>>> Last year, in October of 4th grade, she spiked a

>>> fever and had " the

>>> look " around her eyes and huge, pussy tonsils again.

>>> Then again it

>>> started more regularly but the fevers aren't as high

>>> - 100 to 101.

>>> But the tonsils (left in particular) are huge, red

>>> and full of puss -

>>> and cover half her throat. She's now in her third

>>> episode in 4

>>> months - beginning May, July and September. Since

>>> she can basically

>>> function in school (when it starts on Wednesday) and

>>> since the fever

>>> is pretty low, we can deal with that part, but it's

>>> the tonsils that

>>> are a major problem. She can't really swallow,

>>> sounds like she's

>>> got something caught in her throat, and is pretty

>>> miserable about

>>> this all starting again. She's involved with

>>> community theatre and

>>> has an audition coming up in a week that she needs

>>> to be able to

>>> sing for and the tonsils make it kind of difficult.

>>>

>>> Now my questions --

>>> Do we try the cimetidine again? Anyone with

>>> experience trying it

>>> again after a relapse?

>>>

>>> Do we start to think more seriously about a

>>> tonsilectomy? I

>>> happened to look at her throat fairly regularly the

>>> week before the

>>> latest episode because she has a molar coming in

>>> that she wanted me

>>> to see. The tonsil is ALWAYS larger than the other

>>> one and you

>>> could still see the pits in it. It covered about

>>> half her throat

>>> before it became enlarged (more ) again. Does

>>> anyone have

>>> experience with an older child having a

>>> tonsillectomy?

>>>

>>> Do we try the prednisone again? I don't really like

>>> the short term

>>> answer when her tonsils are staying enlarged over a

>>> long period of

>>> time.

>>>

>>> Any thoughts and ideas would be really welcome.

>>> I'll be calling the

>>> doctor tomorrow to get her seen and see what she

>>> recommends!

>>>

>>> Thanks,

>>> Armstrong

>>> Mansfield, MA

>>> Mom to (10 - ) and Alec 13 1/2

>>>

>>>

>>>

>>>

>>>

>>

>>

>> __________________________________________________

>>

[Guest guest]

Cheri, your comments and inquiry about whether or not kids grow out of

or PFSs reminded me of something our doc said to us in the spring. It was

an offhand remark, something along the lines of: " You know, 30 years ago,

these kids [with ] were just 'sickly'. " She was trying to tell us that

so little was known about all of this (meaning these auto-inflammatory fever

disorders) that few people paid much attention to following the " sickly "

kids as they grew up. And since it seems that the symptoms of can

stop for a while or change over time, perhaps doctors didn't put it all

together. Our doc was of the opinion that we really don't have enough

longitudinal data to be able to say with certainty that this is a benign

disorder that just " goes away " .

Kate, Mom to Ben, 3-yrs-old (diagnosed ; possible HIDs)

[Guest guest]

I've said previously that I feel that, although my symptoms pale in

comparison to my sons, that I definitely have similar problems.

I was a very healthy child - until the end of puberty.

It was like I fell apart at the seams!

Finally at about the age of 15 they removed my tonsils.

Since then I have had clusters of " episodes " , which of course I was always

told were viruses, I'd say only every five or so years. So it hasn't been

too bad for me.

However, now that I am perimenopausal I seem to be going through monthly

episodes. I get a low grade fever, sore throat, swollen glands, and tender

armpits. I have also had leg pains, not necesarily during episodes, for

the last at least ten years which I have always referred to as my " phantom

leg pains "

I definately think that there is some kind of hormonal influence for the

girls.

As my oldest daughter is starting to develop I worry about might be

instore for her - but at least we wouldn't be dealing with the absolute

mystery that we had with .

So far tested negative for TRAPS and CIAS1. And we are still

waiting for the FMF and HIDS results.

Even if these come back negative, I'm convinced of a genetic link. I think

alot of the kids labeled as will eventually be re-diagnosed as more

markers are found.

To the mother looking support. I too had my fare share of bathroom

moments!

I think once I was assured that it wasn't cancer or something termianl I

relaxed a lot.

My amazes me - when the fever is over, he never looks back! Fever

after fever, Dr. after Dr., and test after test for years and he doesn't

have a clue that he isn't anything but your average little boy.

When I went to the Periodic Fever 5k in July, I was explaining to him that

it was to help kids who are sick like him.

He looked at me like I had two heads!

This summer I had a rare moment that really put things into perspective.

Over the summer my 8 year old daughter spilled a " cup of noodles " on her

lap resulting in a 2nd degree burn.

In the couse of the burn treatment she was sent to a plastic surgeon at

St. 's Hospital for Children in Philadelphia.

I won't go into details - but sitting in that waiting room I got a good

dose of reality. The suffering of some of these children must be

immeasurable. And from the look of things alot of them had been dumped

onto the State by their parents who were just unable to cope.

All I can say is focus on the good days, our kids to have them not all do.

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA