Re: New to group, my introduction

[Guest guest]

Hi Rebekah,

Sorry to hear about Elijah. The unknown is a scary place to be. We see a

specialist at CHOP (Children's Hospital of Philadelphia). Our experience has

been (as well as others in this group) that you have to move beyond your general

pediatrician to find a doctor who is experienced in this field.

Where do you live? Are you near a children's hospital? Maybe someone in your

area who is in this group can refer you to a place with resources that can help

your family. is generally diagnosed by eliminating other conditions with

similar symptons. We saw a diagnostic specialist at CHOP who worked directly

with our pediatrician so we could have most of the diagnostic tests (blood work,

looking for mouth sores, etc) performed in our pediatrician's office. Even

though we live down the street from CHOP, this was a more relaxed and comforting

way to get our little guy through the process. Maybe something like this is a

possibility for you.

Mother to Henry, 2 and Ben, 8 months

Rebekah Hinton <bek@...> wrote:

Hi everyone,

My name is Rebekah and I am so happy to have found out about on

the web and to find this group. I think my son, Elijah, who just

turned 3 may have . Even if it turns out he does not I cannot

tell you what a relief it is to know that there are other children out

there getting frequent fevers of unknow origin. It helps tremendously

to know that other parents are out there going through a similar

experience. Elijah has always had high fevers when he got sick.

Although as a baby he was not sick often, in fact I can only remember

1 bad cold and 1 double ear infection in his first year. Although we

did battle a milk allergy, intolerance to soy, and severe reflux.

Since starting preschool in the fall, Elijah has been constantly sick.

Whenever he is sick he runs a high fever (up to about 105 degrees F)

and generally vomits. I'm thinking the vomiting may now be due to

reflux (which we thought had stopped around age 2) that is triggered

when he is sick which in turn makes him vomit. We have had the flu,

pharyngitis, pneumonia and virus after virus (at least that's what

they've said regarding the fever.) Since January every 2 weeks he has

had another fever lasting at least 2 days. It is like clockwork and

peaks around the same times each day. He is lethargic when above 102,

but otherwise acts normal. When really high I have noticed him

grinding his teeth and his lips getting bright red. He also often

complains of a stomach ache. Does this sound familiar to any of you?

I mentioned to our doctor but he has never heard of this

syndrome. I am overwhelmed by the amount of information and am not

sure exactly how to proceed. I will review your message boards but

would be grateful for any information you may have in which way to

proceed.

Thank you,

Rebekah

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[Guest guest]

Hi Rebekah,

Welcome to the list.

My son is a MAJOR teeth grinder, especially when he is

fevering. He also gets very red lips that become quite

chapped.

Does Elijah generally grind his teeth at night even

when he isn't fevering?

Gillian

mother of Kai 3 years

--- Rebekah Hinton <bek@...> wrote:

> Hi everyone,

> My name is Rebekah and I am so happy to have found

> out about on

> the web and to find this group. I think my son,

> Elijah, who just

> turned 3 may have . Even if it turns out he

> does not I cannot

> tell you what a relief it is to know that there are

> other children out

> there getting frequent fevers of unknow origin. It

> helps tremendously

> to know that other parents are out there going

> through a similar

> experience. Elijah has always had high fevers when

> he got sick.

> Although as a baby he was not sick often, in fact I

> can only remember

> 1 bad cold and 1 double ear infection in his first

> year. Although we

> did battle a milk allergy, intolerance to soy, and

> severe reflux.

> Since starting preschool in the fall, Elijah has

> been constantly sick.

> Whenever he is sick he runs a high fever (up to

> about 105 degrees F)

> and generally vomits. I'm thinking the vomiting may

> now be due to

> reflux (which we thought had stopped around age 2)

> that is triggered

> when he is sick which in turn makes him vomit. We

> have had the flu,

> pharyngitis, pneumonia and virus after virus (at

> least that's what

> they've said regarding the fever.) Since January

> every 2 weeks he has

> had another fever lasting at least 2 days. It is

> like clockwork and

> peaks around the same times each day. He is

> lethargic when above 102,

> but otherwise acts normal. When really high I have

> noticed him

> grinding his teeth and his lips getting bright red.

> He also often

> complains of a stomach ache. Does this sound

> familiar to any of you?

> I mentioned to our doctor but he has never

> heard of this

> syndrome. I am overwhelmed by the amount of

> information and am not

> sure exactly how to proceed. I will review your

> message boards but

> would be grateful for any information you may have

> in which way to

> proceed.

>

> Thank you,

> Rebekah

>

>

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[Guest guest]

Hi Rebekah,

It is overwhelming in the beginning. I felt the same way, and

scared by some of what I read. It was this group that truly helped

me get started on the path to discover what was happening with our

son, Tyler. We are still working towards that goal.

Our Doctor in the beginning was a Family Doctor. He had no idea

about or PFS conditions. He kept telling us these episodes

were just his immune system building itself from exposure to virus

strains. With the fevers coming almost like clockwork every 2

weeks, and the symptoms being almost identical each time, I was

skeptical.

I began too research on the net, and I found this group. I began to

keep a LOG of episodes including: duration, temp each time taken,

medicine given (antipyretics), how often fever returned, description

of all symptoms (vomitting, mouth sores, cranky, coloration of skin

and lips) anything you might think of.

Go back and record atleast the dates you can remember due to missed

events.

We then went to a Pediatrician who was familiar with PFS

conditions. After 5 months he was able to refer us to UCSF

Children's Hospital. We were sent to the Rheumatology Department.

We are now working on testing to illiminate conditions and try to

find which Tyler has.

Again, the LOG is what got us the acceptance to the Specialist. It

was faxed from our Pediatrician's office and we had an appointment

the next week. While it may not happen that fast for you, it is an

important tool to give them.

Other advice, just keep at it. You know your child, and if it seems

something other than virus exposure, then keep searching.

Where are you at? By posting a subject like " Anyone else in (name

of state and town) you may be able to find a Doctor in the area to

get an appointment with.

For help with the fevers, I found out from this site about

alternating ibuprofen and tylenol every 3 hours (this makes each

medicine 6 hours apart from itself) to help keep it under control.

This still never drops Tyler's fevers to normal, just gets in under

or near 102 degrees.

We recently started the Naproxen twice a day as prescribed from our

Rheumatologist, and Tyler's last episode was remarkably milder. No

vomitting, ate solid food entire time, episode only 1.5 days instead

of 3, and he slept better. I gave tylenol every 4 hours and his

fever was never over 102.2- it normally ran 104 and 105 each time.

Every child has their own situation, so this may not work for yours.

I know this is a lengthy response. I hope some of it helps you. I

understand some of what you are going through.

Again, I recommend the LOG first. Then try to find a Doctor in your

area who is familiar with PFS conditions. They will most likely

refer you to a Children's Hospital in the area. Some Children's

Hospitals, I have been told, let you self refer.

Pruden

Tyler 16 Months (undetermined PFS - fevering for 14 Months)

Northern California