Introduction

[Guest guest]

welcome kristin. i'm new too. my son is alfonso the fonz . he is 13 and

still with . sence birth. so good luck on your road to answers chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

Hi - I am also new to the group and new to . My 6 yr old daughter

has been going through the same as your son for about 3 1/2 yrs. We also were

told cold, virus, etc., even with 106 fevers. We were also told she will grow

out of it which I know isn't true. We were prescriped prednisone to start at

the onset of fever. From the other women in this group, I have discovered it

isn't a cure and may not even have the outcome I am looking for. Good luck with

your son. I would like to hear more about your progress.

Stutzman <beefdaddy@...> wrote:

Hi Everyone!

We are new to the group and thought that I would take a minute to

introduce myself. My name is and I am a SAHM to my (just

turned) 2 year old son Brayden! His doctor just called me today with a

diagnosis of . I am still researching what exactly this means so I

would love any information, websites and books that you all suggest.

Brayden has been getting fevers since about the age of 6 months but we

were always told it was a cold (blah blah blah). Just recently did I

'SUGGEST' they do testing as the fevers were getting closer together and

higher each time. The last went up to 107f and was very scary. So I am

glad that they have finally come up with a diagnosis. At this point his

doctor wants to try a steroid (I belive prednisone) for a few months and

if that works suggest having his tonsils removed. Has anyone else done

this and was the outcome successful?

I have a myspace page that talks in my blog about his latest episode

(and others). It is set to private but if you are interested in me

adding you just send me a message saying that you are with this group

and I will glady accept it! The address is www.myspace.com/goddesskms

<http://www.myspace.com/goddesskms> !

I look forward to reading all the post and thanks for letting me join

the group!

[Guest guest]

hi kristin . my son has been on prednisone for 3 years now. it has not hurt

his growth at all his blood pressure is great . he now knows when he needs

it. as a matter of fact he fell on his skate board and hurt his wrist . which

has caused an attack . he just came to me asking for some prednisone . which

he hates so i know he is not well .. i check his temp he is running a temp.

and his glands are the size of ping pong balls . dose anyone notice that

trama causes an attack. anyway he is in the 95 persent on the growth chart .

hes

5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

all. the only thing is attacks sometimes come closer together. but with fonz

it doesn't matter he has attacks all the time sometimes 5 a month. or more.

he has a hard time with stress . and being 13 stress runs his life so take

care i'm one that is glad for the prednisone chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

i was told the same thing. not true as of yet. when he was little i would

hold him all nite a pray the temp would just go down a little so he would wake

up. cry all nite. still today fonz falls out a 103 because for him that is

very high he has a normal low temp. then when he gets to 106 i have to still

get him up into a cool bath. try lifting a 5'2' boy I'm 5 foot. but I'll do

it forever if i have to. he can not hardly stay awake a this time. our only

relief has been the predenisone. thanks for your thoughts chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

I was also told he would grow out of it.....is this not the case??? What have

you heard about the prednisone that you didn't like? We haven't used it yet so

I'm not sure what to expect.

Stutzman

Your Pure Romance Consultant

MySpace Blog

Re: Introduction

Hi - I am also new to the group and new to . My 6 yr old daughter

has been going through the same as your son for about 3 1/2 yrs. We also were

told cold, virus, etc., even with 106 fevers. We were also told she will grow

out of it which I know isn't true. We were prescriped prednisone to start at the

onset of fever. From the other women in this group, I have discovered it isn't a

cure and may not even have the outcome I am looking for. Good luck with your

son. I would like to hear more about your progress.

Stutzman <beefdaddy@...> wrote:

Hi Everyone!

We are new to the group and thought that I would take a minute to

introduce myself. My name is and I am a SAHM to my (just

turned) 2 year old son Brayden! His doctor just called me today with a

diagnosis of . I am still researching what exactly this means so I

would love any information, websites and books that you all suggest.

Brayden has been getting fevers since about the age of 6 months but we

were always told it was a cold (blah blah blah). Just recently did I

'SUGGEST' they do testing as the fevers were getting closer together and

higher each time. The last went up to 107f and was very scary. So I am

glad that they have finally come up with a diagnosis. At this point his

doctor wants to try a steroid (I belive prednisone) for a few months and

if that works suggest having his tonsils removed. Has anyone else done

this and was the outcome successful?

I have a myspace page that talks in my blog about his latest episode

(and others). It is set to private but if you are interested in me

adding you just send me a message saying that you are with this group

and I will glady accept it! The address is www.myspace.com/goddesskms

<http://www.myspace.com/goddesskms> !

I look forward to reading all the post and thanks for letting me join

the group!

[Guest guest]

Have you not found anything yet that works for your son? I was told that they

will eventually grow out of this......have you not found that to be true?

Stutzman

Your Pure Romance Consultant

MySpace Blog

Re: Introduction

welcome kristin. i'm new too. my son is alfonso the fonz . he is 13 and

still with . sence birth. so good luck on your road to answers chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

It makes him hyper. And shaky and very restless. And also when he has an

attack anything is a good thing to complain about. but it works thanks chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

fonz takes the pill, and he says that tastes bad too. chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

how much cimetidine does a child that age take? fonz takes 300 mg three

times a day. which makes a total of 900 mg a day and its not working he has an

appointment today with dr. new month starting all over again....thanks chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

Hi

May I ask - why does he hate to take the prednisone? What is it he

hates about it? How does it make him feel? The child I take care of

who has doesn't take prednisoe so I am curious as to why Fonz

hates taking it.

Thanks

Joanne

sheenhicks@... wrote:

> hi kristin . my son has been on prednisone for 3 years now. it has not

> hurt

> his growth at all his blood pressure is great . he now knows when he

> needs

> it. as a matter of fact he fell on his skate board and hurt his wrist

> . which

> has caused an attack . he just came to me asking for some prednisone .

> which

> he hates so i know he is not well .. i check his temp he is running a

> temp.

> and his glands are the size of ping pong balls . dose anyone notice that

> trama causes an attack. anyway he is in the 95 persent on the growth

> chart . hes

> 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> all. the only thing is attacks sometimes come closer together. but

> with fonz

> it doesn't matter he has attacks all the time sometimes 5 a month. or

> more.

> he has a hard time with stress . and being 13 stress runs his life so

> take

> care i'm one that is glad for the prednisone chicks

>

>

>

>

[Guest guest]

it that from the taste or because he bounces around like a rubber band? is he

still on the cimedine? do you think the high temps burn cells in there

brain, just wondering what they will be like when they grow up. if we got temps

that high there would be a big panic at the hospital thinking we were going to

die or something . but with the kids they just blow it off no rush. just

wondering. chicks

**************************************

See what's free at

http://www.aol.com.

[Guest guest]

Hey!

My son (2.3) hated taking prednisone b/c it tastes terrible. We finally had it

favored with bubble gum and Equal.

>

> From: Joanne <joanne4@...>

> Date: 2007/05/02 Wed AM 10:23:56 EDT

>

> Subject: Re: Introduction

>

> Hi

> May I ask - why does he hate to take the prednisone? What is it he

> hates about it? How does it make him feel? The child I take care of

> who has doesn't take prednisoe so I am curious as to why Fonz

> hates taking it.

>

> Thanks

> Joanne

>

>

> sheenhicks@... wrote:

>

> > hi kristin . my son has been on prednisone for 3 years now. it has not

> > hurt

> > his growth at all his blood pressure is great . he now knows when he

> > needs

> > it. as a matter of fact he fell on his skate board and hurt his wrist

> > . which

> > has caused an attack . he just came to me asking for some prednisone .

> > which

> > he hates so i know he is not well .. i check his temp he is running a

> > temp.

> > and his glands are the size of ping pong balls . dose anyone notice that

> > trama causes an attack. anyway he is in the 95 persent on the growth

> > chart . hes

> > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > all. the only thing is attacks sometimes come closer together. but

> > with fonz

> > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > more.

> > he has a hard time with stress . and being 13 stress runs his life so

> > take

> > care i'm one that is glad for the prednisone chicks

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

FYI -They also make quick disolve grape flavored tablets of the orapred brand.

They actually taste good. They are brand new and quite expensive, but they

work. Trish

kpreveaux@... wrote: Hey!

My son (2.3) hated taking prednisone b/c it tastes terrible. We finally had it

favored with bubble gum and Equal.

>

> From: Joanne <joanne4@...>

> Date: 2007/05/02 Wed AM 10:23:56 EDT

>

> Subject: Re: Introduction

>

> Hi

> May I ask - why does he hate to take the prednisone? What is it he

> hates about it? How does it make him feel? The child I take care of

> who has doesn't take prednisoe so I am curious as to why Fonz

> hates taking it.

>

> Thanks

> Joanne

>

>

> sheenhicks@... wrote:

>

> > hi kristin . my son has been on prednisone for 3 years now. it has not

> > hurt

> > his growth at all his blood pressure is great . he now knows when he

> > needs

> > it. as a matter of fact he fell on his skate board and hurt his wrist

> > . which

> > has caused an attack . he just came to me asking for some prednisone .

> > which

> > he hates so i know he is not well .. i check his temp he is running a

> > temp.

> > and his glands are the size of ping pong balls . dose anyone notice that

> > trama causes an attack. anyway he is in the 95 persent on the growth

> > chart . hes

> > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > all. the only thing is attacks sometimes come closer together. but

> > with fonz

> > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > more.

> > he has a hard time with stress . and being 13 stress runs his life so

> > take

> > care i'm one that is glad for the prednisone chicks

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

We actually use the syrup form of prednisone. it's called prelone syrup 50 and i

give emma 5ml. she's too young to take a pill. she didn't seem to mind the taste

any more than other medicines (calpol etc). Inga

Re: Introduction

>

> Hi

> May I ask - why does he hate to take the prednisone? What is it he

> hates about it? How does it make him feel? The child I take care of

> who has doesn't take prednisoe so I am curious as to why Fonz

> hates taking it.

>

> Thanks

> Joanne

>

>

> sheenhicksaol (DOT) com wrote:

>

> > hi kristin . my son has been on prednisone for 3 years now. it has not

> > hurt

> > his growth at all his blood pressure is great . he now knows when he

> > needs

> > it. as a matter of fact he fell on his skate board and hurt his wrist

> > . which

> > has caused an attack . he just came to me asking for some prednisone .

> > which

> > he hates so i know he is not well .. i check his temp he is running a

> > temp.

> > and his glands are the size of ping pong balls . dose anyone notice that

> > trama causes an attack. anyway he is in the 95 persent on the growth

> > chart . hes

> > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > all. the only thing is attacks sometimes come closer together. but

> > with fonz

> > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > more.

> > he has a hard time with stress . and being 13 stress runs his life so

> > take

> > care i'm one that is glad for the prednisone chicks

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

That is GREAT to hear!!! Thanks....

>

> From: trish santos <summerday148@...>

> Date: 2007/05/02 Wed PM 12:43:43 EDT

>

> Subject: Re: Re: Introduction

>

> FYI -They also make quick disolve grape flavored tablets of the orapred brand.

They actually taste good. They are brand new and quite expensive, but they

work. Trish

>

> kpreveaux@... wrote: Hey!

> My son (2.3) hated taking prednisone b/c it tastes terrible. We finally had it

favored with bubble gum and Equal.

>

> >

> > From: Joanne <joanne4@...>

> > Date: 2007/05/02 Wed AM 10:23:56 EDT

> >

> > Subject: Re: Introduction

> >

> > Hi

> > May I ask - why does he hate to take the prednisone? What is it he

> > hates about it? How does it make him feel? The child I take care of

> > who has doesn't take prednisoe so I am curious as to why Fonz

> > hates taking it.

> >

> > Thanks

> > Joanne

> >

> >

> > sheenhicks@... wrote:

> >

> > > hi kristin . my son has been on prednisone for 3 years now. it has not

> > > hurt

> > > his growth at all his blood pressure is great . he now knows when he

> > > needs

> > > it. as a matter of fact he fell on his skate board and hurt his wrist

> > > . which

> > > has caused an attack . he just came to me asking for some prednisone .

> > > which

> > > he hates so i know he is not well .. i check his temp he is running a

> > > temp.

> > > and his glands are the size of ping pong balls . dose anyone notice that

> > > trama causes an attack. anyway he is in the 95 persent on the growth

> > > chart . hes

> > > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > > all. the only thing is attacks sometimes come closer together. but

> > > with fonz

> > > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > > more.

> > > he has a hard time with stress . and being 13 stress runs his life so

> > > take

> > > care i'm one that is glad for the prednisone chicks

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

I am sorry, long morning....my son hates the Cimetidine not the prednisone. We

actually use the prednisone tablets that disolve and pop in the back of his

mouth. But glad to know they come in grape.

mom to Conyers 2.3

>

> From: Inga Bothner <ingabothner@...>

> Date: 2007/05/02 Wed PM 12:47:03 EDT

>

> Subject: Re: Re: Introduction

>

> We actually use the syrup form of prednisone. it's called prelone syrup 50 and

i give emma 5ml. she's too young to take a pill. she didn't seem to mind the

taste any more than other medicines (calpol etc). Inga

>

>

> Re: Introduction

> >

> > Hi

> > May I ask - why does he hate to take the prednisone? What is it he

> > hates about it? How does it make him feel? The child I take care of

> > who has doesn't take prednisoe so I am curious as to why Fonz

> > hates taking it.

> >

> > Thanks

> > Joanne

> >

> >

> > sheenhicksaol (DOT) com wrote:

> >

> > > hi kristin . my son has been on prednisone for 3 years now. it has not

> > > hurt

> > > his growth at all his blood pressure is great . he now knows when he

> > > needs

> > > it. as a matter of fact he fell on his skate board and hurt his wrist

> > > . which

> > > has caused an attack . he just came to me asking for some prednisone .

> > > which

> > > he hates so i know he is not well .. i check his temp he is running a

> > > temp.

> > > and his glands are the size of ping pong balls . dose anyone notice that

> > > trama causes an attack. anyway he is in the 95 persent on the growth

> > > chart . hes

> > > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > > all. the only thing is attacks sometimes come closer together. but

> > > with fonz

> > > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > > more.

> > > he has a hard time with stress . and being 13 stress runs his life so

> > > take

> > > care i'm one that is glad for the prednisone chicks

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

He takes 1/2 teaspoon twice a day. Not sure what the mg. come out to be! I

just pray it works. We finally got him to take it last week without spitting it

out at us!!! But since starting the predisone in late March at the beginning of

each fever, he has fevered 3 times since then. One episode was within 8 days.

>

> From: sheenhicks@...

> Date: 2007/05/02 Wed PM 01:09:09 EDT

>

> Subject: Re: Introduction

>

> how much cimetidine does a child that age take? fonz takes 300 mg three

> times a day. which makes a total of 900 mg a day and its not working he has

an

> appointment today with dr. new month starting all over again....thanks chicks

>

>

>

> **************************************

> See what's free at http://www.aol.com.

>

>

>

[Guest guest]

my 5 year old son takes 45mg of orapred. it is not his favorite but he takes it

because he knows it will stop the fever in an hour. My son called the cimedine

the rubber band medicine

Bridget

trish santos <summerday148@...> wrote:

FYI -They also make quick disolve grape flavored tablets of the

orapred brand. They actually taste good. They are brand new and quite expensive,

but they work. Trish

kpreveaux@... wrote: Hey!

My son (2.3) hated taking prednisone b/c it tastes terrible. We finally had it

favored with bubble gum and Equal.

>

> From: Joanne <joanne4@...>

> Date: 2007/05/02 Wed AM 10:23:56 EDT

>

> Subject: Re: Introduction

>

> Hi

> May I ask - why does he hate to take the prednisone? What is it he

> hates about it? How does it make him feel? The child I take care of

> who has doesn't take prednisoe so I am curious as to why Fonz

> hates taking it.

>

> Thanks

> Joanne

>

>

> sheenhicks@... wrote:

>

> > hi kristin . my son has been on prednisone for 3 years now. it has not

> > hurt

> > his growth at all his blood pressure is great . he now knows when he

> > needs

> > it. as a matter of fact he fell on his skate board and hurt his wrist

> > . which

> > has caused an attack . he just came to me asking for some prednisone .

> > which

> > he hates so i know he is not well .. i check his temp he is running a

> > temp.

> > and his glands are the size of ping pong balls . dose anyone notice that

> > trama causes an attack. anyway he is in the 95 persent on the growth

> > chart . hes

> > 5 foot 2 inches and wares a size 10 shoe. so its not hurting his body at

> > all. the only thing is attacks sometimes come closer together. but

> > with fonz

> > it doesn't matter he has attacks all the time sometimes 5 a month. or

> > more.

> > he has a hard time with stress . and being 13 stress runs his life so

> > take

> > care i'm one that is glad for the prednisone chicks

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

Welcome to the group, what is a SAHM?

Azzie

From: [mailto: ] On Behalf Of

Stutzman

Sent: Tuesday, May 01, 2007 3:33 PM

Subject: Introduction

Hi Everyone!

We are new to the group and thought that I would take a minute to

introduce myself. My name is and I am a SAHM to my (just

turned) 2 year old son Brayden! His doctor just called me today with a

diagnosis of . I am still researching what exactly this means so I

would love any information, websites and books that you all suggest.

Brayden has been getting fevers since about the age of 6 months but we

were always told it was a cold (blah blah blah). Just recently did I

'SUGGEST' they do testing as the fevers were getting closer together and

higher each time. The last went up to 107f and was very scary. So I am

glad that they have finally come up with a diagnosis. At this point his

doctor wants to try a steroid (I belive prednisone) for a few months and

if that works suggest having his tonsils removed. Has anyone else done

this and was the outcome successful?

I have a myspace page that talks in my blog about his latest episode

(and others). It is set to private but if you are interested in me

adding you just send me a message saying that you are with this group

and I will glady accept it! The address is www.myspace.com/goddesskms

<http://www.myspace.com/goddesskms> !

I look forward to reading all the post and thanks for letting me join

the group!

[Guest guest]

Thanks, Everyone. That was helpful in learning about why the kids don't

like the meds or are ok with it.

Joanne

sheenhicks@... wrote:

> It makes him hyper. And shaky and very restless. And also when he has an

> attack anything is a good thing to complain about. but it works thanks

> chicks

>

>

>

>

[Guest guest]

On May 28, 2007, at 5:10 AM, Lucy Capo- wrote:

> Hi all,

> As you all may know as a new person we are asked to

> introduce ourselves.....

Welcome, Lucy!!

Alfred

in San Francisco

[Guest guest]

When you say high bacterial count which levels were high? My daughter has had

problems with her ASO and DnaseB levels being very high.

Trish

<composerswife@...> wrote:

Hello everyone. I found your site on a search for . A family

friend recommended me

do some research on it-I had never heard of it before, but am trying to figure

out what's

wrong with my 2 1/2 year old daughter.

6 weeks ago, I took her to the Immediate Care Center for a high fever (104) and

loss of

appetiite. The Dr. diagnosed her with Strep Throat, even though the culture came

back

negative (he said she had all the underlying symptoms). He gave her Omnicef. 5

days later

she woke up with a stiff neck and her pediatrician ran blood work, bacterial

levels were

high, so we went to the hospital for a meningitis test. The spinal tap was clear

and it took

about 1 1/2 weeks for her to stop complaining of neck pain. Then 5 weeks later,

a high

fever (104, 105) returned for a few days and I took her back to her

pediatrician. They ran a

ton of tests and blood work. Ruled out strep (although her throat was very red

and

swollen), chest xray for pneumonia was clear, urine was ok and eventually all

the mono

tests were negative. Her blood work was the same as it was 5 weeks ago, with the

inflammation and high bacterial count. It took about 5 days, but her fever

subsided and

she is doing much better. The Drs thought allergies or a viral infection. Her

symptoms

were high fever, delirium, inconsolable crying, and lethargic. She also

complained of belly

aches.

I am not sure if she has as I am just starting my research. I would

appreciate any

feedback and I look forward to reading all the articles and information. Thank

you so

much for your time.

-

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

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

Play Sims Stories at Games.

[Guest guest]

I'm new here too. I'm sorry for your situation and your mother's. I have no clue what to tell you to expect. I will try to listen though and be supportive whenever you want to talk about this, and are coping with it and stuff.

Amy

In a message dated 6/18/2007 10:29:41 P.M. Central Daylight Time, charstamper@... writes:

I am Char. I am an amputee of many years....Not a bother. We ( Mom and I ) just found that she has ' metastic liver cancer of unknown primary'....She has not decided whether or not to get 'chemo'....I just want to know what I can expect..

See what's free at AOL.com.

[Guest guest]

Just keep a journal of the time, day, fever temp, other symptoms, if they do lab

work or not make a spread sheet of it all or a journal. In Houston at the

Childrens hospital at the Rheumatology dept. they have heard of , if the

fevers keep happening it might be good to go to Houston. We lived in TX for 2yrs

at lackland. We saw a Dr. Ng who said he knew , but they turned us in to

CPS - child protective services, he didn't believe a child could have a fever

every month with the same symptoms! Then we saw Dr. Atkins in San ,

Infectious Disease doctor, who was the same as Dr. Ng. We got fines of the ying

yang for our daughter missing too much school! We went to Houston, she was

diagnosed w/ after having it for 7yrs.

Chris

@...: mete2005@...: Mon, 25 Jun 2007 18:13:11

-0700Subject: introduction

Hi, my name is Cara and I just joined this group. I live in Plano, Texas with my

husband and 23 month old son. Aidan (my son) has had 4 episodes of recurrent ,

unexplained fever since March. He hasn't been diagnosed with , but I found

what little info that is our there, and thought the symptoms sound the same as

what we have experienced recently. My Dr. just keeps saying that it's a virus- 4

viruses in 3 months with exactly the same symptoms (which is no symptoms)? I

don't think so.I have looked around this site some, but the articles seem

overwhelming to even begin to tackle. Is there some easy, lay-person info about

how to rule out other PFS? (I didn't even know there were other periodic fever

syndromes!) Where should I start on this road of info gathering? At the moment

we are in " hurry up and wait " mode to see if it happens again. If it does, I am

definetly pushing for something- I just don't know what.Thanks for your

help!Cara__________________________________________________________Need Mail

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Hi Cara! We live a little south of Fort Worth in Burleson. It's hard to

diagnose the - it's a disease that is diagnosed by exclusion.

Depending on what symptoms your son is having - you could see a

specialist - mostly people start with infectious disease. That's who my

son Aidan started seeing. We now see a Ped. Rhum. at ish Rite that

is WONDERFUL - Dr. Punaro. You have to get your doctor to refer you

over there - but it's worth it.

Start keeping a calendar of all your child's symptoms - and start

seeing if you can find a pattern. Sometimes you do with and

sometimes you don't.

Good luck!

Hannah

Aidan - 4 - fevering 25 months

Sid - 6

Fort Worth, TX