New here

December 12, 2007

Hello there.

Welcome. I was wondering if youve lived in the same home for 9 years. My nephew had

severe breathing prob. headaches until my brother realised that toxic mold was the cause

& ripped his carpet out and sealed the walls and replaced his wood floor base.

Rock on, *Ami*

ABILITY is what you're capable of doing

MOTIVATION determines what you do

ATTITUDE determines how well you do it

Lou Holtz

www.myspace.com/such_comedy

www.morethanenoughtogoaround.com

From: tn_nascar_fan@...Date: Wed, 12 Dec 2007 13:45:01 +0000Subject: new here

Hi all,I just joined. My name is Tammi, I'm 26 and have had a constant headache for 9 years. I was a dx'd with fibromyalgia syndrome in 2000.Today is a much better day for me than yesterday. yesterday I had went all night without sleeping and wasn't getting any sleep. I slept last night and still my head is throbbing. I just don't know what to do for the headache anymore. I am going to go to my neurologist later today to see what he says this time. He's my 8th neurologist. I've had all the MRI's, CT scans, spinal tap, EEG, blood work, ect., everything is normal. Thankful that it's normal, but it does get old not knowing what is wrong.I'm getting tired and need to get ready for my doctor's appointment. So, I'm going to end this email. But hope to talk to some of you all soon.Tammi i’m is proud to present Cause Effect, a series about real people making a difference. Learn more

December 12, 2007

WELCOME TO THE GROUP ;;TAMMI;; SORRY THAT YOU HAVE HEADACHES SO OFTEN;; THEY ARENT FUN;; BEST WISHES WITH THE DR;; HOPE THEY GET TO THE BOTTOM OF IT;; I HAVE A DAUGHTER WHO GETS PERIOD TIME HEADACHES & ENDS UP THROWING UP FOR 24 TO 48 HRS;;SHE IS FLAT DOWN THEN IN BED;;YOU TAKE CARE OF YOURSELF HUGA DORT FROM MICHtn_nascar_fan <tn_nascar_fan@...> wrote: Hi all,I just joined. My name is Tammi, I'm 26 and have had a constant headache for 9 years. I was a dx'd with fibromyalgia syndrome in

2000.Today is a much better day for me than yesterday. yesterday I had went all night without sleeping and wasn't getting any sleep. I slept last night and still my head is throbbing. I just don't know what to do for the headache anymore. I am going to go to my neurologist later today to see what he says this time. He's my 8th neurologist. I've had all the MRI's, CT scans, spinal tap, EEG, blood work, ect., everything is normal. Thankful that it's normal, but it does get old not knowing what is wrong.I'm getting tired and need to get ready for my doctor's appointment. So, I'm going to end this email. But hope to talk to some of you all soon.Tammi

December 25, 2007

Hi -

Welcome to our group. Congrats on the weight lost so far!! That is great!!

Keep up the good work.

in WA310/257.2/170 (WW Flex)WOOOOHOOOOO - 52.8 lbs gone!!Do not ask the Lord to guide your footsteps, if you are not willing to move your feet.-AnonymousSee AOL's top rated recipes and easy ways to stay in shape for winter.

January 3, 2008

Welcome, !

I grew up in St. Louis, and have taken my son, Eli,

who is now 3, to Dr. O'Connor at Cardinal Glennon

before. He is a pediatric

hematologist/oncologist/infectious disease doc, and we

had a very positive experience with him. I believe

there are others in this group that see some of the

specialists at Children's Hospital.

We live in Prescott, AZ, which is a pretty small town

with no pediatric specialists, so we have only been to

Cardinal Glennon once, however, my mom is a pediatric

nurse practitioner there.

So many of us have heard the " it's a virus " routine,

so I am glad you broke out of that! It took us

almost a year to get a diagnosis! You are lucky to

have met that ER doc who took you seriously! For us

it was the on-call pediatrician who I didn't know very

well, who, on a Saturday in December of 2006 said " I

think I know what your son has! " He mentioned ,

and it described Eli completely. Of the 3 doctors in

our peds group, he was the only one who had ever seen

it before.

Right now, we use Prednisone for about half of Eli's

fever episodes. Sometimes it makes the episodes come

unbearably close together...in December he had THREE

rounds of fever in just 10 days. So, we then let

Eli suffer through a full fever cycle, of about 3-4

days, alternating Tylenol and Ibuprofen until someone

somewhere is getting rich off of it! Then we get

about a 3 week break before the next fever cycle (due

any minute now, and it's never been more than a 23 day

break).

We are also using Singulair, which for some has a

dramatic helpful effect. I can't say it's a miracle

drug for us, but it does lower the overall temps of

the fever episode with no apparent side effects. We

have not tried Tagamet, which many on this group are

having good results with.

Many here will attest to the success of a

tonsillectomy. It has not been recommended to us,

although I wonder, since so many report complete

resolutions of all fevers afterwards! Wouldn't that

be wonderful! Most of us here are in it for the long

haul otherwise!

Welcome to the group! You have found the right place!

Jen Harvey

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January 4, 2008

Hi

I share your frustration! We were also told for ages 'it's just a virus' and so

were many parents on this board.

Firstly, is a diagnosis of exclusion so one cannot really say it's

without ruling out other PFS (periodic fever syndromes) such as HIDS, TRAPS,

FMF, juvenile arthristis etc.

Once those tests come back negative one can pretty much assume it must be .

It can be treated with Prednisone, a cortico-steroid but many parents on this

board are understandably worried about using a steroid regularly. It resolves

the fever within a couple of hours but has the side effect that it is likely to

bring the episodes closer together. We use prednisone on our daughter and have

seen the episodes more frequently at first, but now they seem to have gone back

to a monthly cycle, sometimes even longer.

A tonsillectomy might work. There are numerous parents on this board who have

had their child's tonsils & adenoids out and never had another episode. Others

still get the other symptoms (joint & tummy pains, mouth ulcers etc) but no more

fevers after the T & A, which obviously also makes this syndrome easier to handle.

We are going to have Emma's (2.5 years, fevering since she was 11 months)

tonsils and adenoids out within the next couple of months. We were going to have

them out in November and then had to cancel the surgery because I was on

bedrest, pregnant with number 2. Emma's little brother was born a week ago and

we're just waiting until he is a few months old and we're in a position to

handle Emma's recovery better, without a newborn to look after!

Hope this helps

Take care

Inga

January 4, 2008

Hi ,

Welcome to the group. You'll get lots of great information here.

As one other mentioned, is a diagnosis of exclusion, but our

Immunologist didn't want to go crazy with tests. We took some fairly

basic tests and ruled out rheumatoid and inflammatory issues (arthritis

and Crohn's, I believe), her symptoms and genetics didn't indicate most

of the other PFS's, and we also tested for HIDS (Hyper IGD). Her

symptoms were quite classic (high fevers, unresponsive to Tylenol,

normal behavior with outrageous fevers, large lymph nodes, red

strep-like throat, ulcers in mouth - no stomach or joint issues that we

are aware of), with the exception that the fevers didn't come on a set

schedule. Our Immunologist indicated about 50% of her cases weren't on

a set cyclical schedule - but it may be because we caught it fairly

early on. I've seen some parents go through spinal taps and bone marrow

tests --- I personally think that might be excessive unless there are

some additional troubling symptoms.

We tried Prednisone and it did in fact work - we started with the 2

mg/kg dosage (which equaled 2 teaspoons of Orapred for a 32 pound 2-year

old), but that dosage made her get very aggressive and fevers started

coming every 12-14 days. In the end, we were using closer to .6 mg/kg

(about 3 mls for a 35 pound 2-year old) - and it did work, but she would

have a low grade (100) fever the following day. Without Prednisone

she'd run about 103-105 (sometimes higher spikes) for about 4-7 days.

And yes - we gave Tylenol and Motrin every 3 hours for that full time.

We tried Cimetidine for 4 months with no major results. This is a

miracle drug for some (about 30% of the population of kids) - but

for us, it simply lowered the fevers a bit (but she would still hit

105-106 frequently). She also ran a constant fever around 99.5 while on

Cimetidine.

We then went in for a consult on ear tubes with her ENT and discussed

as well. Since she had had 17 episodes in 14 months of high

fevers with throat involvement, he recommended a T & A. We scheduled it 2

weeks later (on 12/11/07). We felt that we didn't want to keep giving

her medicine every day for the next several years. She has (knock on

wood) been fever free since 11/16. She was due for a fever right about

the time we went in for the T & A. She's gone 70 days before, so I'm not

yet declaring victory, but she is sleeping sounder and has bounced back.

Regarding the T & A on a young child (she was 28 months) - it is REALLY

tough for about 10 days. I underestimated how tough it would be

(despite all the warnings from other moms on this board). We thought we

were going to have to take her back to the hospital to be put on an IV,

then one day she just rounded a corner and within 48 hours of our

absolute panic at keeping her hydrated she was eating like normal. At

about 12 days after the surgery she downed 2 bowls of chili and about 3

bowls of ice cream. I didn't even know she liked chili! Luckily she's

a big kid, because she probably lost at least 3 pounds in a week. She

didn't eat ANYTHING for a week - only the Pedialyte we forced into her

via syringe.

So... there are some options for treatment. I'd definitely recommend

getting a prescription for Orapred and trying it, but then I'd also try

to use the smallest dose that is still effective. I'd certainly try

Cimetidine and probably would try Singulair. My husband got to a point

that he was tired of giving her daily medication when the ENT felt so

strongly that the T & A may work for her, that we decided to go ahead with

the T & A (especially since she'd likely need more ear tubes and be under

general anesthesia anyway). If the T & A doesn't work, we'll likely try

Singulair.

Best of luck to you. There is a wealth of knowledge from this group.

Ginger

Daughter - le, almost 2.5 years old

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

12/11/07)

Son - Jay, 8 months old

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January 4, 2008

Thank you for your feedback. I am opomistic to determine the best

approach to treat her. We see the Immunologist on the 31st and maybe

can get some resolution. Its like waiting for the other shoes to drop

til she gets the next episode and it all starts over. I am just glad

that we can know what is going on and I have a place to hear others,

so I know I am not alone and we are not crazy, oh jeez..its just

another virus.

January 4, 2008

Thank you for your feedback. I am opomistic to determine the best

approach to treat her. We see the Immunologist on the 31st and maybe

can get some resolution. Its like waiting for the other shoes to drop

til she gets the next episode and it all starts over. I am just glad

that we can know what is going on and I have a place to hear others,

so I know I am not alone and we are not crazy, oh jeez..its just

another virus.

January 7, 2008

Hi ,

I live in Doniphan, MO, and we made the 3 hour drive to St. Louis to

St. Louis Children's about a month ago. Our pediatrician had been

saying for several months that his fevers were caused by a virus as

well, but something just didn't click with us about that. We finally

got him to refer us up north. Like you, our son's test would always

come back normal or negative. Our ped. first sent us to an Infectious

Disease specialist who immediately stated she thought it was , and

we were lucky enough to get to see the Immunologist that afternoon, who

verified the other specialist. Currently, we are waiting on this next

round of fevers to try out the prednisone, so we don't know yet if it

will work. As for our pediatrician, he still believes it's a virus,

regardless of what Children's says, so I do definitely feel your

frustrations. Hang in there!

Liz, mom to , 12 months old

January 7, 2008