New member introduction

[Guest guest]

Hi Bill

Welcome!

Our daughter (also Emma) 22 months also had . With her, ibuprofen works no

better than Paracetamol (I alternate the two as her fever gets too high to stick

to the 6-hour intervals of either). Funnily enough, I used to give her Omega-3

oil every day and have found her intervals to be longer (they went from 3-4 to

7-14 weeks) once I stopped giving the oil. No idea whether stopping the oil and

lengthening of intervals are actually related but it's an interesting

observation!

Take care

Inga

new member introduction

Hi, Folks,

I just joined the list and it asks to send a letter of introduction,

so here it is. I haven't read through all of the info here in the

group yet, but am eager to do so.

My daughter Emma (almost 4 years old) was diagnosed as likely having

a couple days ago, after a year of periodic fevers and a bit of

fighting on our part for a referral to a specialist (an infectious

disease doc at Dartmouth who sees and treats it frequently, though not

specifically in his field). We're doing to try the prednisone to

confirm the diagnosis next time she lights up. The physician

recommended searching for this group.

Before being clued in to I was doing my own research to try to

figure out what might be going on with her, as her primary care

physician was telling us it was just a new virus each month (I didn't

buy it after I found the periodicity on the charting was so striking).

Her symptoms are completely controlled with ibuprofen, which we

initially gave for fever, so I was coming at it from that angle,

looking into the mechanisms of action of ibuprofen, notably the COX-1

and COX-2 inhibitory implications. I've got a stack of research

papers here focused on NSAID effects, especially on the arachnidonic

acid cascade and prostaglandin production, and how that might trigger

a hypothalamus response. I'm also interested in looking into

signaling pathways between the hypothalamus and parts of the brain

known to mediate periodic cycles to see if there's anything there.

This isn't my day-job, so I get through it little by little, and hope

it'll be helpful in the end.

I find the prednisone treatment interesting from the anti-inflammatory

angle and how ibuprofen is a non-steroidal anti-inflammatory drug and

works such wonders for Emma. It seems likely-to-certain to me that

some inflammatory process is involved here as an underlying cause or

at least a pathway. As a precautionary method I've been doing what I

can to improve her ratios of Omega-3 fatty acids to Omega-6's

(especially arachnidonic acid, as above) for anti-inflamatory benefit

from the diet but it's a constant challenge with a modern western diet

(and there's no fish oil that's pleasant to take for a three year

old). I believe this has helped reduce the severity and duration of

her episodes, but my sample size is only 1 and she's getting older, so

cause and effect is very hard to determine there.

Anyway, I'm going to be reading up on the past discussions here over

time, and hopefully some of the above has already been covered. If

anybody's doing similar research I'd love to hear from you.

And just a 'thanks' to those who started and maintain this group, and,

of course, to everybody who participates for sustaining it.

-Bill

___________________________________________________________

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[Guest guest]

Hi Tina,

I'm in Atlanta and have extra scobies. Contact me off

loop and we can make arrangements to get one to you.

ann

--- Tina Paxton <Frecs@...> wrote:

> Hello,

>

> My name is Tina and I live in southeastern North

> Carolina. I have been

> drinking store-bought kombucha off and on over the

> past year and want to

> start making my own. I joined this group in hopes

> of locating a source of a

> mushroom and also to learn about the process of

> fermenting the tea.

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hi Tina,

I'm in Atlanta and have extra scobies. Contact me off

loop and we can make arrangements to get one to you.

ann

--- Tina Paxton <Frecs@...> wrote:

> Hello,

>

> My name is Tina and I live in southeastern North

> Carolina. I have been

> drinking store-bought kombucha off and on over the

> past year and want to

> start making my own. I joined this group in hopes

> of locating a source of a

> mushroom and also to learn about the process of

> fermenting the tea.

>

>

________________________________________________________________________________\

____

Get the free toolbar and rest assured with the added security of spyware

protection.

http://new.toolbar./toolbar/features/norton/index.php

[Guest guest]

Hi Marni,

welcome to the group. My daughter was full term, no reflux or

constipation. I am also thinking about the surgery for her...just

not sure yet.

.

>

> Hi everyone-

> I am a new member as well. My daughter was 3 in March and started

> fevering shortly after her second birthday although we didn't start

> seeing a pattern until this march, right on her 3rd birthday! She

> gets 105-106 fevers lasting for 4 days and happening every 3 weeks

or

> so. Her tonsils get white puss all over them and get very swollen.

She

> also develops the mouth sores. Since this has started, She has a

real

> aversive reaction to taking oral medicine, which has been a huge

> struggle. We have tried everything. She also coughs really badly

from

> Motrin, which is why she hates it and tylenol just doesn't cut it.

> It's been hard for her to miss so much school and has really

created

> a lot of anxiety in her with doctor visits and adjusting to shifts

in

> routines. My ped. has been wonderful and diagnosed her fairly

quickly.

> We have also consulted an ID doc at Hopkins and NIH, as well as a

ped.

> immunologist in Denver. At this point, we are opting for a t & A

surgery

> in a couple weeks. Everyone seems to be in favor of it considering

how

> much tonsil involvement she has. Even when healthy, her tonsils are

> quite large. I hate to put her through this but if it gets rid of

it,

> I would rather do it sooner than later! She too had a severe case

of

> reflux from birth until 16 months, which I wonder if its related in

> some way. She also has pretty severe constipation....anyone else's

> have that? Also, she was a preemie. Interestingly, I have a rare

> immune deficiency with no symptoms. It was diagnosed by bloodwork

and

> I get treated monthly with IVIG infusions. Some doctors have

wondered

> if there is any relationship.

> Just wanted to introduce myself and thank all of you for all the

> information I have already read

> Marni

>

[Guest guest]

Hi ,

I was touched by your story. I am new to the board also, and my son

is 20. He had his tonsils out when he was nearly 5, after several

months of cyclical fevers/glands/tonsils and back then my

pediatrician never mentioned . Anyway he was well for a long

time after, and like I said in my intro, he started to get more

illnesses in high school, but not cyclical. But for the past two

years he has had intermittent cycles.

It is a little bit easier when they are older. He is fine when he

isn't sick. He gets pretty good grades in college, good enough to

play ice hockey. He has plenty of energy, lots of friends, and when

he isn't sick, he eats me out of house and home. In fact, since the

fevers have come back he has put on 20 lb! He is good about taking

his acetaminophen and ibuprofen, which when I alternate, do a fair

job of keeping his fever somewhat lower. In so many ways he is

having a normal life and even though I'm new at this my husband and I

have been taking stock of all the good in his life. For , he has

breaks of 4 or 5 months before the cycles come back for 3 or 4

months. I'm hoping the prednisone won't make them come more often,

but I realize this is a risk. I would like him to try it. So the

pill minders are in his car, on his keychain, in his bathroom; I

wanted to put some in his hockey bag but he drew the line there.

Take care and hope you have more good days than bad

Barb

>

> Hello everyone,

>

> My name is and our son Sam (who is just turning 2) was

> adopted and brought home with us at 3 days old. He is our only child

> and is in the process of getting diagnosed, possibly . We have

> very little concrete health history on his birthmom (although we are

> in contact with her) and no information whatsoever on his birthdad.

>

> Sam's first high fever was at 2 1/2 months old, and at that point he

> went in to hospital and had spinal tap, chest x-ray, blood and urine

> workups. High WBC but nothing else showed up.

>

> At 9 months he started fevering monthly, and at almost 1 year he had

> his first febrile seizure. He has had 3 febrile seizures now, his

last

> one coming this past June, and a total of 3 visits to the hospital

(no

> over-night stays, just a lot of blood and urine work, IVs to combat

> dehydration, etc).

>

> We moved from Ohio to NC this summer and until that point had been

> seeing our family doctor in the Cleveland area. He and the hospital

> had chalked it up to " your child just gets sick a lot " and " must be

a

> virus " because the many many strep and other tests always came back

> negative. On the final hospital visit the attending physician (same

> Dr. who had seen him at 2 1/2 months) did suggest seeing an

> immunologist for further testing.

>

> Upon seeing a new pediatrician in Charlotte, we were immediately

> referred to an ID specialist and our first visit with him was 8/20.

He

> mentioned as a possibility and wanted us to chart the fevers

and

> come back on 11/20. As far back as I've charted so far, Sam's fevers

> have come 3-4 weeks apart: June 10, July 7, August 10, September 1,

> September 24, October 28. This summer was the first time we noticed

> the mouth sores and sore throat, and those symptoms seem to be

> increasing in severity, or perhaps he can vocalize/show those more

now

> as he gets older. During the most recent cycle he complained for the

> first time of joint pain ( " Knee hurt, Mommy " ). We took him to the

> regular ped. to have his tonsils/throat checked - I could not get in

> there to see myself, and I wanted her to check his mouth - she said

> his mouth/throat looked terrible. Ran a strep test to be sure -

> negative. She also took blood to test for JRA, no results on that

yet.

>

> He has not had any genetic testing. The ped. did call the specialist

> and he gave an Rx for Prednisone, we are to give it to him on the

> first day of the next fever (should be around 11/20 when we are

> scheduled to see him next) and again on the second day. We have all

> the normal fears - will the steroid make the fevers come more

> frequently, will they hurt his body if he continues to take them,

will

> he continue to have fevers every month for years, will he be able to

> go to school and have a " normal " life, will we have remission only

to

> see it return at puberty...so many questions. Until now we have

heard

> that they eventually " grow out of it " but as I learn that so many

> fevers show up again at puberty (and I have not yet read any stories

> about children past puberty who have truly grown out of it) I start

to

> wonder how long our precious Sam will have to deal with this. Really

> until this last episode we were still hopeful that something else

was

> at work here - we had always been able to match the fevers with some

> event we thought might be related such as teething, being around

> someone sick, plane travel...now it is starting to sink in that this

> is some sort of periodic fever syndrome and we are worried, scared,

sad.

>

> I am thankful for so many things, however - for finding this group,

> for our doctors in Charlotte who have been so aggressive, for Sam's

> perfect health in between episodes, and for the fact that I can work

> from home and take care of Sam full time.

>

> I look forward to getting to know you all, sharing ideas, and I pray

> that all of our children will grow into healthy adults.

>

>

>

[Guest guest]

Welcome to the group!! Due to the return in fevers are you now planning on

doing the genetic testing? Kaia has Traps and her reaction to pred was very

similar. We have just begun a six month Enbrel cycle and I am hoping for great

results!!

Tera Wong-Mom to Kaia (4) TRAPS

Ehlenbach <mlehlenbach@...> wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at Bridge

Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter has been

getting care through Seattle Children's Hospital. It has been an interesting

road for us. We moved to Seattle in June, 2006 from Madison, WI and Madeleine's

fevers began the week we moved (or maybe the month before...was it or

roseola that caused her fever of 104 the week after her first birthday???). My

husband, also a physician (adult pulmonary and ciritcal care fellow at the

University of WA), and I just assumed she had picked up a virus for the first

few episodes. Then she had a urinalysis suspicious for UTI, so we had a renal

workup, which was fortunately negative. We were then

referred to ID, and that's when the diagnosis of was made. She does not

have adenopathy or aphthous ulcers, and only one time did she have pharyngitis.

We elected not to do testing for TRAPS and other periodic fever syndromes, as we

tried prednisone and it has worked well. She was fever-free for four months

(fortunately during her sister's first four months of life -- I could not have

handled a miserable 2 year old and a newborn!) but six weeks ago the fevers

returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course has

been likely smoother than others'. We have resigned ourselves to the fact that

daycare is not an option for our family, and we fortunately have a great nanny

who can handle fevers. Interestingly, only once in my pediatric training, which

I completed in 2005, did I have a lecture on periodic fever syndromes, and I

never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free), age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Welcome...

As a pediatrician, you may be interested in this information that I got

from my pediatrician - and you may already subscribe to this series.

But I found this CD to be a great discussion on .... I posted this

originally on 7/30/07. We just saw our pediatrician for the 2 year

checkup today - and he confirmed he has 3 cases. Currently, we

are 1 month into a cimetidine trial and Dani has gone 53 days without a

fever over 101. She has continued having mild potential " episodes "

every 2 weeks or so.

Again welcome - and here was my previous post on some information from

Dr. Feder:

My pediatrician gave me a CD that I

listened to most of on the way to

work this morning. Dr. Henry Feder is

recorded giving a lecture on

. It is possible to purchase these

CD's at the website

www.audiodigest.org and the CD is Volume

53, Issue 07, April 7, 2007.

You must first register, and mine said

it errored out, but I could log

in. The CD's are $21 with a $10

shipping. It probably isn't worth it

to everyone - but I have really enjoyed

hearing him walk through how he

diagnoses this disorder.

There is also a write-up of the CD at

http://www.audio-digest.org/pages/htmlos/1392.7.7227300578737444842/PD53

<BLOCKED::http://www.audio-digest.org/pages/htmlos/1392.7.72273005787374

44842/PD53>

07 that covers some of what is

discussed.

The other thing I was thinking is that

you might recommend your

pediatrician and/or specialist to

purchase this CD if they need to know

more on this.

Ginger

Ginger

Daughter - le, Just Turned 2 years

old (fevering since 7 months,

diagnosed at 15 months)

Son - Jay, 3 months old

Ginger M. Hackett, PMP, ABCP

Systems Solutions Principal

CAR Financial Services, Inc.

New Work Phone: (770) 828-1397

TREO Phone: (404) 915-5035

Ginger.Hackett@...

________________________________

From: [mailto: ] On Behalf Of

Ehlenbach

Sent: Thursday, August 09, 2007 1:53 PM

Subject: new member introduction

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and

my daughter Madeleine was diagnosed about 6 months ago with after

about 9 months of monthly fevers up to 104.9 and lasting 5 days. I am

also a pediatrician. I currently am working as a pediatric hospitalist

at Bridge Children's Hospital in Tacoma, WA. We live in Seattle, so

my daughter has been getting care through Seattle Children's Hospital.

It has been an interesting road for us. We moved to Seattle in June,

2006 from Madison, WI and Madeleine's fevers began the week we moved (or

maybe the month before...was it or roseola that caused her fever

of 104 the week after her first birthday???). My husband, also a

physician (adult pulmonary and ciritcal care fellow at the University of

WA), and I just assumed she had picked up a virus for the first few

episodes. Then she had a urinalysis suspicious for UTI, so we had a

renal workup, which was fortunately negative. We were then

referred to ID, and that's when the diagnosis of was made. She

does not have adenopathy or aphthous ulcers, and only one time did she

have pharyngitis. We elected not to do testing for TRAPS and other

periodic fever syndromes, as we tried prednisone and it has worked well.

She was fever-free for four months (fortunately during her sister's

first four months of life -- I could not have handled a miserable 2 year

old and a newborn!) but six weeks ago the fevers returned, and yesterday

she developed another one.

Being a pediatrician, I know how to " work the system " so I think our

course has been likely smoother than others'. We have resigned ourselves

to the fact that daycare is not an option for our family, and we

fortunately have a great nanny who can handle fevers. Interestingly,

only once in my pediatric training, which I completed in 2005, did I

have a lecture on periodic fever syndromes, and I never saw a patient

that had one.

I am anxious to hear the stories of other families and learn from

others' experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free), age

5 months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Good question -- I'm going to follow up with ID and decide. Good luck to you

with Enbrel. I hope it works!

Tera Wong <mom2thegirl@...> wrote:

Welcome to the group!! Due to the return in fevers are you now

planning on doing the genetic testing? Kaia has Traps and her reaction to pred

was very similar. We have just begun a six month Enbrel cycle and I am hoping

for great results!!

Tera Wong-Mom to Kaia (4) TRAPS

Ehlenbach <mlehlenbach@...> wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at Bridge

Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter has been

getting care through Seattle Children's Hospital. It has been an interesting

road for us. We moved to Seattle in June, 2006 from Madison, WI and Madeleine's

fevers began the week we moved (or maybe the month before...was it or

roseola that caused her fever of 104 the week after her first birthday???). My

husband, also a physician (adult pulmonary and ciritcal care fellow at the

University of WA), and I just assumed she had picked up a virus for the first

few episodes. Then she had a urinalysis suspicious for UTI, so we had a renal

workup, which was fortunately negative. We were then

referred to ID, and that's when the diagnosis of was made. She does not

have adenopathy or aphthous ulcers, and only one time did she have pharyngitis.

We elected not to do testing for TRAPS and other periodic fever syndromes, as we

tried prednisone and it has worked well. She was fever-free for four months

(fortunately during her sister's first four months of life -- I could not have

handled a miserable 2 year old and a newborn!) but six weeks ago the fevers

returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course has

been likely smoother than others'. We have resigned ourselves to the fact that

daycare is not an option for our family, and we fortunately have a great nanny

who can handle fevers. Interestingly, only once in my pediatric training, which

I completed in 2005, did I have a lecture on periodic fever syndromes, and I

never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free), age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Thank you for joining this group. My son is 4 1/2 yrs old. He ran fever for a

couple of years before we decided that it was not a virus. He never got sick.

I think he has had antibotics 2 times in his life. He did have strep once or

twice (very mild), he is very sensistive to sun light but we have very blue eyes

and that seems to be geting better. I took him to the eye Dr. with everything

being ok. He did have one ulcer once or twice too. He was diagnosed with

by an immunologist at Children's Medical in Dallas. We did the Prednisone one

dose. Called the immulologist back since it aborted the fever. He told me to

not to give any more and to come back to see him. He did mention that he had

other patients with . We did and he suggested the T & A. We had the T & A and

we have been fever free since Oct. 06. Cade did run a slight fever of 99.1 for

about an hour or two one day about three weeks ago. He feels so good now I

cannot say again how glad I am that

we chose to do this. Before he was lethargic, ashey looking, did not eat well,

but would be normal between fevers. I must also say that Cade's fevers never

went above 103.7. Hope this helps you and I am glad you are here so please stay

and keep us informed.

Thank you,

Leanne

Cade 4 1/2 yrs old

Ehlenbach <mlehlenbach@...> wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at Bridge

Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter has been

getting care through Seattle Children's Hospital. It has been an interesting

road for us. We moved to Seattle in June, 2006 from Madison, WI and Madeleine's

fevers began the week we moved (or maybe the month before...was it or

roseola that caused her fever of 104 the week after her first birthday???). My

husband, also a physician (adult pulmonary and ciritcal care fellow at the

University of WA), and I just assumed she had picked up a virus for the first

few episodes. Then she had a urinalysis suspicious for UTI, so we had a renal

workup, which was fortunately negative. We were then

referred to ID, and that's when the diagnosis of was made. She does not

have adenopathy or aphthous ulcers, and only one time did she have pharyngitis.

We elected not to do testing for TRAPS and other periodic fever syndromes, as we

tried prednisone and it has worked well. She was fever-free for four months

(fortunately during her sister's first four months of life -- I could not have

handled a miserable 2 year old and a newborn!) but six weeks ago the fevers

returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course has

been likely smoother than others'. We have resigned ourselves to the fact that

daycare is not an option for our family, and we fortunately have a great nanny

who can handle fevers. Interestingly, only once in my pediatric training, which

I completed in 2005, did I have a lecture on periodic fever syndromes, and I

never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free), age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Hello ,

My son Jerrett had his first unexplained fever at 12wks old. It was 102.9,

I will never forget that. The fever lasted for a week and I had to take him

everyday for a rocephrine (sp) shot. After that, the fevers came about

every other month and he was put on antibiotics. At 12 months old, shortly

after we moved to Virginia, the Dr. said he had hand foot and mouth b/c he

had some ulcers in his mouth. Nothing on his hands or feet though. By age

two we'd been seen by the same Dr. for a year and I'd had him in the office

for fevers of 103/104 and yucky pussy looking tonsil's but never strep

throat. Finally one of the Dr's in the group that was seeing my son,

mentioned . I went back in later in the week and saw our regular

pediatrician and we talked about the diagnosis and thought we'd try

prednisone when the next episode occurred. Four weeks later, we did try it

and one dose took the fever and the throat pain away. In April 07, two

months before my son turned 3, I took him to a rheumatologist that sees the

FPAPA patients at UVA. Jerrett's fevers had risen to 105.8 at the highest.

He was put on Cimeditine to see if it would help since we both agreed he was

too young to gamble on the T & A. After 3 months of being on the Cimeditine,

the fevers dramatically reduced. His highest fever has only been 101.9. He

still has the episodes with the sore throat, laying around, and complaints

that his neck hurts (lymph nodes swollen). We are on the Cimeditine (1tsp

twice a day) treatment until Dec 07. After that, we will reevaluate and see

what the next step is. I am glad his fevers have reduced but am still

worried since he still has obvious episodes with the neck pain and won't eat

b/c his throat hurts. My son has other issues also such as constant

congestion with mucus buildup. He's been on Zyrtec and Singulair for almost

two years. It has helped but has not taken it away. We also had him tested

for allergies and he was found to be allergic to milk but nothing

environmental. I had previously discovered that whey made his congestion

worse and caused him to throw up mucus. He's been drinking soy milk since

he was about 18months old b/c on whole milk he would throw up about half a

cup of mucus 2 or 3 times a day. Amazingly Jerrett is happy between

episodes and loves to play with his older sister (5) and younger brother (1)

who thankfully have no health issues. I don't think I could handle more

than one child with this illness. Thanks for all you do and I hope our

testimony's will help in the research and cure of this illness.

Thank you,

Niemeier

Jerrett 3yrs old

_____

From: [mailto: ] On Behalf Of

Leanne

Sent: Friday, August 10, 2007 3:33 PM

Subject: Re: new member introduction

Thank you for joining this group. My son is 4 1/2 yrs old. He ran fever for

a couple of years before we decided that it was not a virus. He never got

sick. I think he has had antibotics 2 times in his life. He did have strep

once or twice (very mild), he is very sensistive to sun light but we have

very blue eyes and that seems to be geting better. I took him to the eye Dr.

with everything being ok. He did have one ulcer once or twice too. He was

diagnosed with by an immunologist at Children's Medical in Dallas. We

did the Prednisone one dose. Called the immulologist back since it aborted

the fever. He told me to not to give any more and to come back to see him.

He did mention that he had other patients with . We did and he

suggested the T & A. We had the T & A and we have been fever free since Oct. 06.

Cade did run a slight fever of 99.1 for about an hour or two one day about

three weeks ago. He feels so good now I cannot say again how glad I am that

we chose to do this. Before he was lethargic, ashey looking, did not eat

well, but would be normal between fevers. I must also say that Cade's fevers

never went above 103.7. Hope this helps you and I am glad you are here so

please stay and keep us informed.

Thank you,

Leanne

Cade 4 1/2 yrs old

Ehlenbach <mlehlenbach@ <mailto:mlehlenbach%40> >

wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at

Bridge Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter

has been getting care through Seattle Children's Hospital. It has been an

interesting road for us. We moved to Seattle in June, 2006 from Madison, WI

and Madeleine's fevers began the week we moved (or maybe the month

before...was it or roseola that caused her fever of 104 the week after

her first birthday???). My husband, also a physician (adult pulmonary and

ciritcal care fellow at the University of WA), and I just assumed she had

picked up a virus for the first few episodes. Then she had a urinalysis

suspicious for UTI, so we had a renal workup, which was fortunately

negative. We were then

referred to ID, and that's when the diagnosis of was made. She does

not have adenopathy or aphthous ulcers, and only one time did she have

pharyngitis. We elected not to do testing for TRAPS and other periodic fever

syndromes, as we tried prednisone and it has worked well. She was fever-free

for four months (fortunately during her sister's first four months of life

-- I could not have handled a miserable 2 year old and a newborn!) but six

weeks ago the fevers returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course

has been likely smoother than others'. We have resigned ourselves to the

fact that daycare is not an option for our family, and we fortunately have a

great nanny who can handle fevers. Interestingly, only once in my pediatric

training, which I completed in 2005, did I have a lecture on periodic fever

syndromes, and I never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free), age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

,

I too go to UVA. Do you see Dr. Saulsbury? My son is 6. He was put on

cimeditine in Dec 06 it was helpful until about May. Then we noticed his last

two fever were rough. Dr. Saulsbury doesn't want us to have a T & A yet either.

We may start using the prednisone this school year because he is going in the

first grade. Good Luck!!

Kim

Fredericksburg, Va

Tyler 6

Keri 11

le13

Re: new member introduction

Thank you for joining this group. My son is 4 1/2 yrs old. He ran fever for

a couple of years before we decided that it was not a virus. He never got

sick. I think he has had antibotics 2 times in his life. He did have strep

once or twice (very mild), he is very sensistive to sun light but we have

very blue eyes and that seems to be geting better. I took him to the eye Dr.

with everything being ok. He did have one ulcer once or twice too. He was

diagnosed with by an immunologist at Children's Medical in Dallas. We

did the Prednisone one dose. Called the immulologist back since it aborted

the fever. He told me to not to give any more and to come back to see him.

He did mention that he had other patients with . We did and he

suggested the T & A. We had the T & A and we have been fever free since Oct. 06.

Cade did run a slight fever of 99.1 for about an hour or two one day about

three weeks ago. He feels so good now I cannot say again how glad I am that

we chose to do this. Before he was lethargic, ashey looking, did not eat

well, but would be normal between fevers. I must also say that Cade's fevers

never went above 103.7. Hope this helps you and I am glad you are here so

please stay and keep us informed.

Thank you,

Leanne

Cade 4 1/2 yrs old

Ehlenbach <mlehlenbach@ <mailto:mlehlenbach %40. com> >

wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at

Bridge Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter

has been getting care through Seattle Children's Hospital. It has been an

interesting road for us. We moved to Seattle in June, 2006 from Madison, WI

and Madeleine's fevers began the week we moved (or maybe the month

before...was it or roseola that caused her fever of 104 the week after

her first birthday???) . My husband, also a physician (adult pulmonary and

ciritcal care fellow at the University of WA), and I just assumed she had

picked up a virus for the first few episodes. Then she had a urinalysis

suspicious for UTI, so we had a renal workup, which was fortunately

negative. We were then

referred to ID, and that's when the diagnosis of was made. She does

not have adenopathy or aphthous ulcers, and only one time did she have

pharyngitis. We elected not to do testing for TRAPS and other periodic fever

syndromes, as we tried prednisone and it has worked well. She was fever-free

for four months (fortunately during her sister's first four months of life

-- I could not have handled a miserable 2 year old and a newborn!) but six

weeks ago the fevers returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course

has been likely smoother than others'. We have resigned ourselves to the

fact that daycare is not an option for our family, and we fortunately have a

great nanny who can handle fevers. Interestingly, only once in my pediatric

training, which I completed in 2005, did I have a lecture on periodic fever

syndromes, and I never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free) , age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Hey Kim,

Yes, we saw Dr Saulsbury. We are supposed to go back in December to

follow-up. If you haven't done the prednisone before, just a tip, it's

yucky even w/the flavoring. I give my son the dose in about 5 oz of

chocolate soy milk and then I add carnation instant brkfst powder to it to

make it really chocolatey. Also, the fevers tend to come more often after

you start using prednisone but it is a miracle drug. It takes the fever and

pain away with in hours for Jerrett. Good to talk to you. Thanks for

writing.

_____

From: [mailto: ] On Behalf Of Kim

Ingalls

Sent: Monday, August 13, 2007 8:15 AM

Subject: Re: new member introduction

,

I too go to UVA. Do you see Dr. Saulsbury? My son is 6. He was put on

cimeditine in Dec 06 it was helpful until about May. Then we noticed his

last two fever were rough. Dr. Saulsbury doesn't want us to have a T & A yet

either. We may start using the prednisone this school year because he is

going in the first grade. Good Luck!!

Kim

Fredericksburg, Va

Tyler 6

Keri 11

le13

Re: new member introduction

Thank you for joining this group. My son is 4 1/2 yrs old. He ran fever for

a couple of years before we decided that it was not a virus. He never got

sick. I think he has had antibotics 2 times in his life. He did have strep

once or twice (very mild), he is very sensistive to sun light but we have

very blue eyes and that seems to be geting better. I took him to the eye Dr.

with everything being ok. He did have one ulcer once or twice too. He was

diagnosed with by an immunologist at Children's Medical in Dallas. We

did the Prednisone one dose. Called the immulologist back since it aborted

the fever. He told me to not to give any more and to come back to see him.

He did mention that he had other patients with . We did and he

suggested the T & A. We had the T & A and we have been fever free since Oct. 06.

Cade did run a slight fever of 99.1 for about an hour or two one day about

three weeks ago. He feels so good now I cannot say again how glad I am that

we chose to do this. Before he was lethargic, ashey looking, did not eat

well, but would be normal between fevers. I must also say that Cade's fevers

never went above 103.7. Hope this helps you and I am glad you are here so

please stay and keep us informed.

Thank you,

Leanne

Cade 4 1/2 yrs old

Ehlenbach <mlehlenbach@ <mailto:mlehlenbach %40. com> >

wrote:

Hello All,

I'm a new member just introducing myself. My name is Ehlenbach, and my

daughter Madeleine was diagnosed about 6 months ago with after about 9

months of monthly fevers up to 104.9 and lasting 5 days. I am also a

pediatrician. I currently am working as a pediatric hospitalist at

Bridge Children's Hospital in Tacoma, WA. We live in Seattle, so my daughter

has been getting care through Seattle Children's Hospital. It has been an

interesting road for us. We moved to Seattle in June, 2006 from Madison, WI

and Madeleine's fevers began the week we moved (or maybe the month

before...was it or roseola that caused her fever of 104 the week after

her first birthday???) . My husband, also a physician (adult pulmonary and

ciritcal care fellow at the University of WA), and I just assumed she had

picked up a virus for the first few episodes. Then she had a urinalysis

suspicious for UTI, so we had a renal workup, which was fortunately

negative. We were then

referred to ID, and that's when the diagnosis of was made. She does

not have adenopathy or aphthous ulcers, and only one time did she have

pharyngitis. We elected not to do testing for TRAPS and other periodic fever

syndromes, as we tried prednisone and it has worked well. She was fever-free

for four months (fortunately during her sister's first four months of life

-- I could not have handled a miserable 2 year old and a newborn!) but six

weeks ago the fevers returned, and yesterday she developed another one.

Being a pediatrician, I know how to " work the system " so I think our course

has been likely smoother than others'. We have resigned ourselves to the

fact that daycare is not an option for our family, and we fortunately have a

great nanny who can handle fevers. Interestingly, only once in my pediatric

training, which I completed in 2005, did I have a lecture on periodic fever

syndromes, and I never saw a patient that had one.

I am anxious to hear the stories of other families and learn from others'

experiences. Thanks to Fran for moderating this group!

Sincerely,

Ehlenbach

Mom of Madeleine with , age 25 months and Bethany (fever-free) , age 5

months

Seattle, Washington

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

Isla <islaqi@...> wrote: Hello my name is Isla,originally from

Cornwall/UK,now living in New

Zealand

Welcome... Isla...Janita here group member and perfumer on the Guild.

.I am a complete newbie at the art of blending perfumes and

totally thrilled to have come across this supportive and informative

group

> Yay ... it is really fun, informative and very educational

.So,to get started....I already have many questions...very basic!:

.. Is there a trick to developing a 'clean'scent memory?Is there a

process of clearing the air,the sinuses,and brain storing?

> No tricks other than building up your scent memory by organoleptic studies

>>>As per clearing your sinuses..... inhaling wool is the best.... Anya

posted up a great radio interview on homegrown with Mandy Aftel for which she

elaborates why wool is better than coffee beans... Look back a couple of days

and you will see it... Other wonderful natural perfumery talk as well ...

..

There seems to be a contradictory 'labelling'policy on perfumed

body care products synthetic vs.natural...and no labelling of

ingredients on perfumes generally.I expect it is different in each

country...any reference would be appeciated.

>>>>> For labelling it is best to contact customs and excise as each country

is different with their rules and regs just as you thought :-)

. I understand the preciousness and rarity of Ambergris to smell but

what does it looks like? I have just lived for 4 weeks in the far

north of NZ and there is a even remoter community that 'collects " it

together with seaweed for petri dishes.Just thought I might get lucky

as I go for a morning beach walk,if I knew what I was looking for!

>>>>These two urls show pictures and give information......:-)

http://www.pbase.com/wvphoto/image/37569744

http://www.profumo.it/perfume/aromatherapy/essential_oils/ambergris_1.htm

Thanks for you input as I embark on what I anticipate will be the most

exciting of my careers to date.

Isla

I think you will enjoy everything here and don't forget to look at the archives,

links, photos and any questions or just want to chime in ... dive in and share..

Good luck with finding beach harvested ambergris and do let us know if you find

some

Every good wish, Janita

Janita Haan Natural Perfume

Flowers of Myddfai project http://www.tiny.cc/flowers817

Janita's Attar http://www.janitasattars.blogspot.com

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

Answers - Get better answers from someone who knows. Tryit now.

[Guest guest]

Welcome Holly and Garth! I use to worry about when would crawl,

creep and then walk. Once he walked, he ran and I sometimes wished he was

back to crawling..lol. He is very motor driven (some kids are and some are

more observer types - just the way they learn and not an indicator of where

they are cognitively).

The closest parent that I can think of off hand lives in Pittsburgh -

kindafunny@... aka Connie, mom to Hannah and more. You are in the snow

belt! I want snow so badly and this is another year that we got jipped on

the pretty white stuff.

Hope you enjoy being here on Upsndowns. It's great to see you all who have

young ones!

--

cindysue@...

New Member Introduction

> Hello Everyone! I am new to the group and thought I would take a

> minute to introduce myself and my family. My name is Holly, I am 28

> years old, married to my husband Garth for almost 3 years, and we have

> a terrific little boy, Max, who is 14 months old. Max has Down

> Syndrome. We had a pre-natal diagnosis so there were no surprises

> when he was born. Many people have asked me since " Are you glad you

> knew before he was born? " and I would have to say yes, for myself and

> my husband I think it was good for us so we could prepare and educate

> ourselves to better advocate and help Max starting the moment he came

> into this world. He is such a joy - he sits well, rolls all over the

> place, scoots on his little butt while sitting, and stands while

> holding onto the couch, coffee table, etc. No crawling yet, however,

> the other day he did crawl backwards and many parents have told us it

> won't be long now before he figures out how to crawl forwards. We

> live in Erie, PA. If anyone on this list lives in the area we would

> love to meet for play dates!

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

> messages to go to the sender of the message.

>

[Guest guest]

Hi Vicki!

Welcome to the group - sounds like you're ready to

go... ;o)

Willow

--- McDowell <victoriousspirit73@...>

wrote:

[Guest guest]

Shanna:

 

As parents sharing similar stories, our hearts go out to you.  Your description

of what occurs has all the workings of , with the exception of the rash -

did that happen once or is that a common symptom?

 

If this is indeed , then the course of action we took for our son was as

follows:

 

1. We switched pediatricians and took ALL of our son's medical history with us,

including a bunch of literature on - there are great articles in the

reference section of this discussion board - get all of them and read them cover

to cover.  When we first met with him we started our discussions about

before he ever saw my son with an episode and we told him we were pretty sure he

had this syndrome.  We gave him all the literature to ensure he was informed. 

With this approach we avoided arguments about viral infections and the like -

which is what drove us away from our previous pediatrician.

 

2. We found an infectious disease (ID) doctor, in addition to our pediatrician

above, who was extremely aware of - as a matter of fact, he is one of the

first Doctors to have identified it and developed some treatement paths for it. 

 

3. Our ID doctor informed us that there is no real test for - it is a

condition that is diagnosed by exclusion.  In other words, he listens to the

history, the symptoms and may even order genetic testing to rule out other

periodic fever disorders.  Those other disorders include Familial Mediterranean

Fever (FMF), TRAPS, and HIDS, to name a few. 

 

4. Once our ID dcotor diagnosed our son, he started him on a course of

cimetidine (brand name Tagamet).  Two doses daily.  This has shown to be

effective in less than 20-30% of cases.  We had some success on it for the first

six months and then it seemed like once spring arrived, BAM our son was

experiencing one of his WORST episodes ever and then the cycles started once

again.

 

5. In addition to the cimetidine, the doctor gave us prednisolone - a steroid. 

This is also referred to as prednisone.  Upon seeing an episode surface, we give

our son the prednisone and it knocks out the entire thing.  Now here's the

catch.  Some people are VERY hesitant to give their children steroids, so they

choose to avoid this and deal with each episode with tylenol and motrin.  ALSO,

you will notice that the timing in between episodes gets shorter - so, it she

was fevering every 30 days before, she might start fevering ever 15 days after

the prednisone dose.  We've experienced some of this.  Many on this board say

that the episodes eventually go back to the later cycles, but we're still

stressed about this side effect.

 

6. Final point and this is where we are today.  There has been some recent press

and even some studies recently conducted that suggest that removing the tonsils

and adenoids is proving to be an effective cure.  We are scheduled to have this

procedure done for our son on July 10th.  We had to convince ourselves we were

doing everything possible.  Even if this doesn't work, we need to know that was

tried everything.

 

7. Just a couple of closing thoughts that have allowed us some sanity, albeit

very little.  First, there are some VERY bad things out there.  When you put

in perspective, this is tough, but not the end of the world.  Also, we

consisently get told that they eventually grow out of this with no long term

health effects by the age of anywhere from 8-12.  We pray this is the truth each

and every day.

 

Hang in there and again, our thoughts are with you.  Make sure to mention the

rash as that is not typically a symptom.  If it only happened once, then

perhaps it was something else.

Regards,

Nick Handrinos

[Guest guest]

Shanna, get a referral for a Infectious Disease Specialist in your State.The ID

doctors are familliar with and will rule out all the other crap first so

they can get this treated.Even if you have to drive hours to get to a specialist

put your life on hold for it. Your right around the corner from regaining

control in your familys life. is horrible when you dont know what it is

because your expecting the worst. I'm glad your here and as a person who

suffered with my little girl for years can say that I know exactly where your at

right now.Stay focused and remember that your an advocate for you child so let

your instincts guide you. I remember one time listening to my little girl

screaming because one quack wanted a clean urine sample instead of the diaper

wafer thing so she gave her a cathater at age two. I wish I could redo that day.

Make sure and mention the rash thing, not sure about that being associated with

but who knows? Google

the ID docs in your State so when you call for your referral you can tell them

where you want to go. Best wishes..Steve

[Guest guest]

Hi Shanna

In addition to Nick and Steve's suggestions, it also helps to take a

log of fevers- dates,how long the episode lasted and how many days

before the next episode.

This will help the ID doctor.

Good luck- I'm confident once you find an ID specialist, you'll have a

better knowledge of and you'll find the best course of action.

Joann mom to Nikitas 4.5 yrs

Scheduled for T & A July 10

Lexi 6 yrs

[Guest guest]

Nick:

Thanks for your reply- I appreciate you taking the time to do that!

I apologize, but should have made it clearer that the rash is not something

that occurs at the same time as her fevers. She is three now and has 4 of

these " entire body " rashes so far. When I discuss her problems with our

doctor, I have never considered them a symptom that goes along with her

fevers. I would say her symptoms are fevers, mouth sores, headache and

lately she complains that her " legs can't walk " which I assume is muscle or

joint pain.

As far as finding an ID doctor knowlegable on , is there a database of

doctor or list I can refer to? I sometimes regret changing pediatricians

because I can " say " she has fevers very often, but he hasn't seen that on

that his own. I feel like I am fighting to just be believable and being

dismissed as an overprotective mother.

Thanks again for your advice.

Shanna Glaeser

[Guest guest]

Shanna:

Just wanted to let you know that my son too had gotten the body rash! But...we

found out that it was actually an allergic reaction to the amoxicillin

antibiotics. Can you think back on if the rashes may have occured during a

period when you daughter was taking anitbitoics? I know my son didn't start

having the rash until day 8 or 9 of taking the meds. But once we figure that out

and stopped the amoxicillin, the rash completely dissapeared!

[Guest guest]

Anyways...just wanted to give you all an update. After another fever episode

last week, we decided enough was enough. I took my son into the pediatrician and

she actually listened to me! She gave us a referral to an ENT. We decided it

would be best just to skip the middle man (ID doctor) and go straight to the

source (ENT) to discuss T & A. Tomorrow is our appt with the ENT!

[Guest guest]

Hi Shanna!

I'm glad you found us!

I want to second the idea of creating a journal. I have had a

journal on 's fevers, symptoms, treatments, etc. since April

2007 when he started fevering. When we finally went to the

children's hospital to see the pediatric rheumatologist, he said the

journal was extremely helpful because all his questions were

answered right there with what I had typed out. I just keep a

little log book by the telephone at home, then transfer it to a word

document on my computer.

Be persistent with your doctor. Our pedi didn't have any clue what

was going on with either. He just kept getting viruses

every single month. I had to do my own research. I didn't get a

referral for a specialist, I just went. Keep us posted on your

progress!!!

Tracey

[Guest guest]

One sentence in your email concerned me... " she became very lethargic " .

Typically kids with can run very high fevers, but are not usually

lethargic. Maybe it is just the term - but my daughter at 106-108 is

certainly slower than normal, but not " lethargic " . She still responds,

moves, talks, etc. the doctors have always said behavior is the most

important thing, not the number of the temperature.

But other than the terms " lethargic " and " unresponsive " - we had very

similar experiences. Dani also had many ear infections. Ultimately, it

was a very informed Pediatrician and ENT that had 7 cases that

helped us. But we did rule out all of the other periodic fever

disorders and illnesses that we could -- HIDS, FMF, Crones, Rheumatoid

Arthritis, etc.

Just keep looking for someone that knows of these disorders and keep

very detailed records of your child's symptoms and timing.

Ginger

Daughter - le, almost 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 1 year old

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

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[Guest guest]

On the other side of the coin, for what its worth, my son too is terribly

lethargic during episodes. We call him the wet noodle. Its really sad to

watch.

Some say that one of the hallmarks of is that despite the high fevers some

kids play as normal during the episodes. This has NOT been our experience at

all. When my son is fevering, nothing can get him excited, he just wants to lay

on our chest the entire time and sleeps a lot, except in the middle of the

night-of course! Though he cannot speak, I suspect his whole body aches and

probably has bad headaches too during an episode.

Mom2

Born 5/11/06

Fevering since he was 9mos old

T & A May 22nd 08

Last Fever May 17th 08

[Guest guest]

-

This sounds like our daughter. She is normally very cheerful, dancing,

laughing and singing as she runs around our home. During her days of fever,

all that stops. I say " lethargic " since she seems tired most of the time

during her lower grade fevers. She will nap often in the afternoon. When

the high fevers of 104+ hit, she becomes unresponsive, or a wet noodle. She

is limp and doesn't talk back to us. However, the exception to this would

be when her fevers drop in the mornings, she demeanor is somewhat normal

again. By noon, the fevers usually are building again. We have not been

diagnosed and are still searching for answers though.

Is her behavior not typical?

Shanna Glaeser

Mom to , & Spencer

's last fever- June 24- 28th