Fever free for 5 and a half months

August 24, 2006

My two and a half year old daughter began fevers when she was about

9 months old. She fevered regularly every 5 - 6 weeks (high fevers

between 104-106 for 5 days) until last August when she had a febrile

seizure. After the seizure we started giving her prednisone, which

made the fevers less predictable. She continued to fever regularly

until last March when the fevers abruptly stopped after regularly

recurring for 16 months. Her last fever was on March 14.

The only other symptoms that Ella had along with the fevers was a

VERY runny nose a couple of days prior to the fevers starting and

she'd also be very tired a day or so prior to the start of a fever.

We notice that Ella still has those symptoms about every 5-6 weeks.

That could be coincidental, or it could be that she is still

suffering from these periodic symptoms and just lacking the fever

now.

Last weekend she had her runny nose and she was very tired. She

slept 4.5 hours on Saturday and 4 hours on Sunday. When she's

experiencing these symptoms I can see it in her eyes - she looks

very rundown. The runny nose and tiredness only last about 36-48

hours and we don't treat with prednisone...and still no sign of

fevers. We know the fevers could return at any time, but with each

passing month we are increasingly hopeful that she is growing out of

this.

August 24, 2006

My daughter Hayden is 7 and for some reason she skips her fevers every

summer - it is really weird. Her last episode was the last week of

school in May (go figure - always seem to hit on big events) - and she

was fine all summer... so far no sign. Typically she tends to start

fevering again in October! Does anyone else find that the fevers tend

to stop in the summer?

Thanks,

Gilman

Daughter Hayden (7) -

Austin, TX.

________________________________

From: [mailto: ] On Behalf Of

(Berggren) Alsleben

Sent: Thursday, August 24, 2006 10:49 AM

Subject: Fever free for 5 and a half months

My two and a half year old daughter began fevers when she was about

9 months old. She fevered regularly every 5 - 6 weeks (high fevers

between 104-106 for 5 days) until last August when she had a febrile

seizure. After the seizure we started giving her prednisone, which

made the fevers less predictable. She continued to fever regularly

until last March when the fevers abruptly stopped after regularly

recurring for 16 months. Her last fever was on March 14.

The only other symptoms that Ella had along with the fevers was a

VERY runny nose a couple of days prior to the fevers starting and

she'd also be very tired a day or so prior to the start of a fever.

We notice that Ella still has those symptoms about every 5-6 weeks.

That could be coincidental, or it could be that she is still

suffering from these periodic symptoms and just lacking the fever

now.

Last weekend she had her runny nose and she was very tired. She

slept 4.5 hours on Saturday and 4 hours on Sunday. When she's

experiencing these symptoms I can see it in her eyes - she looks

very rundown. The runny nose and tiredness only last about 36-48

hours and we don't treat with prednisone...and still no sign of

fevers. We know the fevers could return at any time, but with each

passing month we are increasingly hopeful that she is growing out of

this.

August 24, 2006

That is Kiara she stops her high fevers for the summer and just goes up and down

up and down .. no higher then `101

She did this last summer too

this summer nih says she is still episoding.. ... without fever .. grrr

mom to kiara 6

Fever free for 5 and a half months

My two and a half year old daughter began fevers when she was about

9 months old. She fevered regularly every 5 - 6 weeks (high fevers

between 104-106 for 5 days) until last August when she had a febrile

seizure. After the seizure we started giving her prednisone, which

made the fevers less predictable. She continued to fever regularly

until last March when the fevers abruptly stopped after regularly

recurring for 16 months. Her last fever was on March 14.

The only other symptoms that Ella had along with the fevers was a

VERY runny nose a couple of days prior to the fevers starting and

she'd also be very tired a day or so prior to the start of a fever.

We notice that Ella still has those symptoms about every 5-6 weeks.

That could be coincidental, or it could be that she is still

suffering from these periodic symptoms and just lacking the fever

now.

Last weekend she had her runny nose and she was very tired. She

slept 4.5 hours on Saturday and 4 hours on Sunday. When she's

experiencing these symptoms I can see it in her eyes - she looks

very rundown. The runny nose and tiredness only last about 36-48

hours and we don't treat with prednisone...and still no sign of

fevers. We know the fevers could return at any time, but with each

passing month we are increasingly hopeful that she is growing out of

this.

August 24, 2006

We are the opposite. 's fevers are closer

together in the Summer.

Jen

Mom to ,4 since 9 months

--- Gilman <katie@...> wrote:

> My daughter Hayden is 7 and for some reason she

> skips her fevers every

> summer - it is really weird. Her last episode was

> the last week of

> school in May (go figure - always seem to hit on big

> events) - and she

> was fine all summer... so far no sign. Typically

> she tends to start

> fevering again in October! Does anyone else find

> that the fevers tend

> to stop in the summer?

>

> Thanks,

>

> Gilman

>

> Daughter Hayden (7) -

>

> Austin, TX.

>

> ________________________________

>

> From:

> [mailto: ] On Behalf Of

> (Berggren) Alsleben

> Sent: Thursday, August 24, 2006 10:49 AM

>

> Subject: Fever free for 5 and a half months

>

> My two and a half year old daughter began fevers

> when she was about

> 9 months old. She fevered regularly every 5 - 6

> weeks (high fevers

> between 104-106 for 5 days) until last August when

> she had a febrile

> seizure. After the seizure we started giving her

> prednisone, which

> made the fevers less predictable. She continued to

> fever regularly

> until last March when the fevers abruptly stopped

> after regularly

> recurring for 16 months. Her last fever was on March

> 14.

>

> The only other symptoms that Ella had along with the

> fevers was a

> VERY runny nose a couple of days prior to the fevers

> starting and

> she'd also be very tired a day or so prior to the

> start of a fever.

> We notice that Ella still has those symptoms about

> every 5-6 weeks.

> That could be coincidental, or it could be that she

> is still

> suffering from these periodic symptoms and just

> lacking the fever

> now.

>

> Last weekend she had her runny nose and she was very

> tired. She

> slept 4.5 hours on Saturday and 4 hours on Sunday.

> When she's

> experiencing these symptoms I can see it in her eyes

> - she looks

> very rundown. The runny nose and tiredness only last

> about 36-48

> hours and we don't treat with prednisone...and still

> no sign of

> fevers. We know the fevers could return at any time,

> but with each

> passing month we are increasingly hopeful that she

> is growing out of

> this.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 24, 2006

Us too! PJ usually stops fevering in late May, early June and the episodes

resume in mid-September. Weird, huh? This has been his pattern for the past

several years.

Pat, mom to PJ, 13yo, clinical FMF

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 25, 2006

Pat,

My son also, over the last 3 yrs stops after May and starts back again in

Aug...This year he had a VERY bad June and has been fever free for 7 weeks now.

The hardest thing is whenever he's in this mode the dr's seem to think he's

outgrowing it. Have you been to NIH yet? Do you have a diagnosis?

RE: Fever free for 5 and a half months

Us too! PJ usually stops fevering in late May, early June and the episodes

resume in mid-September. Weird, huh? This has been his pattern for the past

several years.

Pat, mom to PJ, 13yo, clinical FMF

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 25, 2006

I'm curious to see how many of us have school-aged children when we talk

about the fevers stopping/decreasing in the summer months... it's

interesting to hear of others with the same things going on. I know OUR

life is a lot less stressful in the summer months - but I don't think

stress can have much to do with it since she fevered since was an

infant... it's so strange!

If the fevers start up again (which I HOPE they don't) I will finally

make our appt with the Infectious Disease Doc to rule everything out and

then look at getting the tonsils out... I would love to try to avoid

what we went through last fall/spring. As they get older it is so hard

for them to miss a whole week of school each month.

Daughter - Hayden (7) -

Austin, TX

August 25, 2006

Hi ! We've been going to NIH for about 4 years now. We have a

diagnosis of Clinical FMF which means that they have yet to match him up with

one of the known gene causes of FMF. Dr. Kastner started him on Colchicine the

first day he was seen at NIH and it has been a miracle drug for him.

Someone else mentioned stress as a possible trigger for the episodes.

According to Dr. Kastner, emotional (or mental) stress and physical over

exertion are the biggest triggers.

Pat, mom to PJ, 13yo, FMF, Virginia

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 25, 2006

Stress? Curious . . . I wonder how much physical exertion they are

talking about - Aidan is 3 and I have signed him up for soccer at the

Y so he can run around and be a big boy like his brother (he's SOOO

excited) - and he is in school 5 days a week while I work . . . I

wonder if this is too much exertion . . . or stress . . . I hate the

uncertantiy of this all . . .

Also - Aidan had reflux as a baby and they wanted to put him on

Reglan - and I think he was on it for a few days - but I did some

research on it and didn't really like it - so they put him on Zantac

(I think) and he was on that from about 2 months till about a year

old - have they found any possible links with and these types of

medications? My mom has been asking me - and I haven't really heard

anyone talk about meds their kids had been on as babies (if any) so I

was just wondering.

Thanks everyone - prayers to all - and have a great weekend!

Hannah

Aidan - 3- fevering for 15 months

Sid - 5 - no reflux or PFS

>

> Someone else mentioned stress as a possible trigger for the

episodes. According to Dr. Kastner, emotional (or mental) stress and

physical over exertion are the biggest triggers.

>

> Pat, mom to PJ, 13yo, FMF, Virginia

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr. We'll help.

Small Business.

>

August 26, 2006

Hannah, I think that as far as physical exertion goes, it's all about extremes.

I know that for PJ it is. Participating in sports, playing with friends,

swimming, running....that's all normal, everyday stuff for kids.They NEED as

much 'normal' as possible!

Pat

---------------------------------

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

August 27, 2006

--Hi Pat and , I just read that you both have children who

tend to take a break during the summer. My son was just

recently diagnosised with and we had a very bad time the entire

month of May and one episode in June. Then he didn't get sick again

until the middle of Aug. I've been reading that a lot of kids tend to

not get sick much in the summer. 's dr. told me this was pretty

typical. That once school started, the fevers started back up again.

Are either of your children on Prednisone? What are their ages?

is 11. Thanks, Cheri- In , " &

" <bgatesjr@...> wrote:

>

> Pat,

> My son also, over the last 3 yrs stops after May and starts back

again in Aug...This year he had a VERY bad June and has been fever

free for 7 weeks now. The hardest thing is whenever he's in this mode

the dr's seem to think he's outgrowing it. Have you been to NIH yet?

Do you have a diagnosis?

>

> RE: Fever free for 5 and a half months

>

> Us too! PJ usually stops fevering in late May, early June and the

episodes resume in mid-September. Weird, huh? This has been his

pattern for the past several years.

>

> Pat, mom to PJ, 13yo, clinical FMF

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr. We'll help.

Small Business.

>

August 27, 2006

Hi Cheri! Welcome to the group! My son PJ is 13 years old and has been diagnosed

with Clinical FMF. That means that what he has looks and walks and talks like

FMF but so far he has tested negative for any of the known mutations.

NIH started him on Colchicine as soon as they saw him and it had the immediate

effect of greatly decreasing the frequency and severity of the episodes which

tells them that it IS FMF because Colchicine has that effect on FMF, not on any

of the other fever disorders.

We have never used prednisone. I asked Dr. Kastner at NIH about using it and

he didn't have a problem with occasional use of it but my local pediatrician

felt very strongly against giving it to a child with an already compromised

immune sysyem so we didn't.

Pat, mom to PJ, 13yo, FMF, Virginia

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 27, 2006

Hi Pat,

My daughter too has episodes that are brought out by stress. This can be

good stress, such as excitment about a birthday or bad, such as any test

anxiety, losing a pet, fighting with us, just about anything. She has had

fevers on every single birthday. She started cycling at 10 months old did

not have a fever for her first birhtday, (probalby because she didn't

understand) and has had a fever on EVERY single birthday since! I have even

gone as far as not telling her what day until an hour or 2 before her party

and sure enough mid way through her party she gets a huge fever!

Reading your emails I find one thing that differs however, my daughter

doesn't get any symptoms other than slight swelling of her lymph nods (and

that's not always the case) an occasional which sore in her mouth. What

prevails is a constant stomach ache. She seldom gets a cold and has only

had 3 ear infections in her life. she has only had strep a couple of times

and that's about it.

Does this sound true of anyone else?

Azzie , Mom to Kianna 9 in October!

_____

From: [mailto: ] On Behalf Of

Bombardier

Sent: Friday, August 25, 2006 1:39 PM

Subject: Re: Fever free for 5 and a half months

Hi ! We've been going to NIH for about 4 years now. We have a

diagnosis of Clinical FMF which means that they have yet to match him up

with one of the known gene causes of FMF. Dr. Kastner started him on

Colchicine the first day he was seen at NIH and it has been a miracle drug

for him.

Someone else mentioned stress as a possible trigger for the episodes.

According to Dr. Kastner, emotional (or mental) stress and physical over

exertion are the biggest triggers.

Pat, mom to PJ, 13yo, FMF, Virginia

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 27, 2006

Hi Pat,

How long ago was your son diagnosed with fmf? My mom

was diagnosed 6 years ago. She was sick with fevers

and sever stomache pain, 3 days of every week, from an

infant into her early 20's and still has mild episodes

about once every 10 yrs or so. She was soo happy when

she finally had a name for her illness. What are PJ's

symptons. Does he get the really bad stomache pain?

tested neg. for fmf. Cheri

--- Bombardier <petish44@...> wrote:

> Hi Cheri! Welcome to the group! My son PJ is 13

> years old and has been diagnosed with Clinical FMF.

> That means that what he has looks and walks and

> talks like FMF but so far he has tested negative for

> any of the known mutations.

>

> NIH started him on Colchicine as soon as they saw

> him and it had the immediate effect of greatly

> decreasing the frequency and severity of the

> episodes which tells them that it IS FMF because

> Colchicine has that effect on FMF, not on any of the

> other fever disorders.

>

> We have never used prednisone. I asked Dr. Kastner

> at NIH about using it and he didn't have a problem

> with occasional use of it but my local pediatrician

> felt very strongly against giving it to a child with

> an already compromised immune sysyem so we didn't.

>

> Pat, mom to PJ, 13yo, FMF, Virginia

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr.

> We'll help. Small Business.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 27, 2006

Hello Azzie! Read the post I sent to Cheri for details but I wanted to add that

PJ also always had swollen lymph nodes in his neck. He had the right one removed

for biopsy pre-NIH. He has never gotten any of the mouth sores, and while he did

catch an occasional cold when he was very young, he hasn't had kind of illness,

viral or otherwise, in probably at least 5 years. He also had constant ear

infections as an infant, resulting in ear tubes at about age 14 months and that

pretty much ended the ear infections.

We all just got over some kind of flu thing that was going around. Everyone at

work and home got it. Everyone that is, except for my son! His pediatrician

still insists on him getting the flu shot every year.

Pat

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

August 28, 2006

This is so disappointing to hear; that some children do not fever for months but

that it comes back!

My son has not fevered since March 20! I keep hoping that he has either

outgrown this or perhaps he never truly had a fever disorder. His fevers have

never been as regular as other children and he has never had any mouth sores.

He is still suffering from migraines. There does not seem to be any pattern to

the migraines nor can we seem to find any triggers for his migraines. His

neurologist says she sees many children who suffer from both migraines and

problems with fevers. She believes there is some type of connection but does

not really have any answers. She has started him a medication and says it may

help with the fevers as well.

I was wondering if anyone has any experience with this drug; Cyproheptadine.

It is used on patients who have a problem gaining weight. It boosts a persons

appetite. The neurologist could not explain why/how it helps migraines but says

she finds it to work great.

Any feedback would be greatly appreciated!

Thanks!

mom to (7 next month, ? & migraines)

and Luke (4 years)

-------------- Original message --------------

From: Bombardier <petish44@...>

Us too! PJ usually stops fevering in late May, early June and the episodes

resume in mid-September. Weird, huh? This has been his pattern for the past

several years.

Pat, mom to PJ, 13yo, clinical FMF

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

August 28, 2006

Just for information... this has nothing to do with or other periodic

fever syndromes.

Periactin is the brand name:

Cyproheptadine, an antihistamine, relieves red, irritated, itchy, watery eyes;

sneezing; and runny nose caused by allergies, hay fever, and the common cold. It

may also relieve the itching of insect bites, bee stings, poison ivy, and poison

oak. This is the USUAL reason it is prescribed! In addition it is used as a

stimulant for weight gain. Lasty, Periactin (cyproheptadine) is an antiserotonin

and antihistamine agent that is effective in some cases of pediatric migraine.

The theory here is because of the decrease in serotonin some how helps reduce

the migrane.

August 28, 2006

Hi Cheri,

Josh will be 8 in Oct. We just made a decision to try pred. his next episode.

Our ID is VERY leery so we will take him in to make sure he isn't just " sick " .

As far as school and fevers go...our dr. said same thing that maybe it's stress,

but we have been charting since before he started school and the pattern was the

same so, who knows. We have not been to NIH yet. We were told it was going to

take about 1 yr. We've already dealt with it this long and it doesn't seem that

he's " out-growing it " (we've heard that since he was 3, lol) so we'll wait.

Depending on the next few months and how things go with the pred, we are

scheduled for tonsillectomy in December. Done some reading from...Israel

researchers, but of course our dr's are not for it, said same as yours.

Anyways, good to hear from someone with same symptoms. Thanks for responding.

, Josh SD, CA

RE: Fever free for 5 and a half months

>

> Us too! PJ usually stops fevering in late May, early June and the

episodes resume in mid-September. Weird, huh? This has been his

pattern for the past several years.

>

> Pat, mom to PJ, 13yo, clinical FMF

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr. We'll help.

Small Business.

>

August 28, 2006