New Member

[Guest guest]

I am a member of a reenactment society (the SCA, maybe you've heard of us

silly people!). I like to research the history behind everything and then

experiment. Perfumes are something I have taken quite an interest in lately!

though I haven't hat too much luck getting anything substantial to speak of

as of yet.

, I married an ex-sca member (used to make fun of him and his duct

tape buddies) then I saw how many bruises they walked away with, and I'm a

performer out at TRF And I love OILS.. Natural stuff.

Heck I even dabble in making as close to " natural " perfumes as you can get

without breaking the bank for some of my performer friends. And like you I

love to research...

[Guest guest]

, I married an ex-sca member (used to make fun of him and his duct

tape buddies) then I saw how many bruises they walked away with, and I'm a

performer out at TRF And I love OILS.. Natural stuff.

Heck I even dabble in making as close to " natural " perfumes as you can get

without breaking the bank for some of my performer friends. And like you I

love to research...

Nice to meet you .

I'm more into the Arts and Sciences field in the SCA, but you're right our

fighters really do work hard at what they do! I just prefer to get my bruises

mentally, LOL.

What type of oils do you dabble in and do you create your own?

" What is it you plan to do with this one wild and precious life? " -- Oliver

http://www.myspace.com/violahowl

http://www.flickr.com/photos/violahowl

[Guest guest]

Hi,I just joined the list. I have been chronically ill since about 1967. I have been diagnosed with transverse myelitis and a few other things. I have had bad periods off an on but now that I am older/old guess it has all taken its toll and so I am sick most of the time. I am really tired of being sick. You ever get tired of being sick. Well, of course you have.I suffer from a lot of spasms, pain, back pain, balance and walking problems. Oh, yes and numbness and stiffness; few more things, ugh.I saw this list and thought I would fit in nicely. I hate to tell "healthy " people how bad I feel, but I thought here no one would mind. I figure most of you feel as bad or worse than I do. Guess I wanted to have some company in my misery. Right now I am pretty miserable, but I will not let that keep me from being polite and civil and understanding of you all.I also have these hemangiomas (2) on my spine and I think they may be what is making me worse right now. My symptoms had gotten worse and so I had some new mris and they showed the hemangiomas. But, even though my symptoms are consistent with where the tumors are, the neuro thinks I am overdoing the pain, numbness, loss of bladder control, difficulty walking and all. I have had it with doctors and have about given up. My family doctor says something is definitely wrong. He is the one that sent me to the neuro. So, that is what brought me here to the sick list. If anyone should email me, they will get a reply email that they must be approved by my spam filter. Do not worry, I will approve everyone right away and you will not need to do anything.Well, thanks for having me in your group.Thanks for letting me moan. I needed to do that, but now will/must go back to my stoic old self. Boyles burg, PAhusband, 2 shelties, 1 lab

[Guest guest]

Nice to have you here!!!

Kerry

Re: new member

Hi,I just joined the list. I have been chronically ill since about 1967. I have been diagnosed with transverse myelitis and a few other things. I have had bad periods off an on but now that I am older/old guess it has all taken its toll and so I am sick most of the time. I am really tired of being sick. You ever get tired of being sick. Well, of course you have.I suffer from a lot of spasms, pain, back pain, balance and walking problems. Oh, yes and numbness and stiffness; few more things, ugh.I saw this list and thought I would fit in nicely. I hate to tell "healthy " people how bad I feel, but I thought here no one would mind. I figure most of you feel as bad or worse than I do. Guess I wanted to have some company in my misery. Right now I am pretty miserable, but I will not let that keep me from being polite and civil and understanding of you all.I also have these hemangiomas (2) on my spine and I think they may be what is making me worse right now. My symptoms had gotten worse and so I had some new mris and they showed the hemangiomas. But, even though my symptoms are consistent with where the tumors are, the neuro thinks I am overdoing the pain, numbness, loss of bladder control, difficulty walking and all. I have had it with doctors and have about given up. My family doctor says something is definitely wrong. He is the one that sent me to the neuro. So, that is what brought me here to the sick list. If anyone should email me, they will get a reply email that they must be approved by my spam filter. Do not worry, I will approve everyone right away and you will not need to do anything.Well, thanks for having me in your group.Thanks for letting me moan. I needed to do that, but now will/must go back to my stoic old self. Boyles burg, PAhusband, 2 shelties, 1 lab

[Guest guest]

, I really feel for you about the neuro being a jerk. These people think they are like unto god, and sometimes they don't even bother to listen to the patient. My neurodocs are like that. I spent 13 hours in the ER last week with what they thought at first was a stroke. (They ruled that out.) I was discharged and told to see my neuro THAT DAY. I called his office and told his secretary this. Now you'd think that the recommendation from the neuro on-call who works with them would carry weight, but no, they couldn't fit me in till September. When I told the neuro's nurse I could hardly walk because of vertigo, she told me to see an ENT. It's insane, and I'm sorry you're having to deal with it too.

SaraOn 8/8/07, Boyles <tooniedog@...> wrote:

Hi,I just joined the list. I have been chronically ill since about 1967. I have been diagnosed with transverse myelitis and a few other things. I have had bad periods off an on but now that I am older/old guess it has all taken its toll and so I am sick most of the time. I am really tired of being sick. You ever get tired of being sick. Well, of course you have.

I suffer from a lot of spasms, pain, back pain, balance and walking problems. Oh, yes and numbness and stiffness; few more things, ugh.I saw this list and thought I would fit in nicely. I hate to tell " healthy " people how bad I feel, but I thought here no one would mind. I figure most of you feel as bad or worse than I do. Guess I wanted to have some company in my misery. Right now I am pretty miserable, but I will not let that keep me from being polite and civil and understanding of you all.

I also have these hemangiomas (2) on my spine and I think they may be what is making me worse right now. My symptoms had gotten worse and so I had some new mris and they showed the hemangiomas. But, even though my symptoms are consistent with where the tumors are, the neuro thinks I am overdoing the pain, numbness, loss of bladder control, difficulty walking and all. I have had it with doctors and have about given up. My family doctor says something is definitely wrong. He is the one that sent me to the neuro. So, that is what brought me here to the sick list. If anyone should email me, they will get a reply email that they must be approved by my spam filter. Do not worry, I will approve everyone right away and you will not need to do anything.

Well, thanks for having me in your group.Thanks for letting me moan. I needed to do that, but now will/must go back to my stoic old self. Boyles burg, PAhusband, 2 shelties, 1 lab

[Guest guest]

hello Welcome!

all those things sound like NO FUN!

surprised that the neuro would suggest you are overdoing the Sx? Despite the ones I've seen that I didn't like, they didn't tell me THAT!

[i'm assuming that they have ruled out the Dx of multiple sclerosis? which does have the balance, numbness, tingling, spasms, bladder concerns, and walking...

and the ups and downs

Or perhaps the transverse myelitis is similar?

but (at least if you handle them) M.S. does have drugs that are said to help...]

but anyway, regardless of Dx and Sx,

you have lots of company here!

to lesser and greater extents...

I'm one of the luckier ones..

Jean

Re: new member

Hi,I just joined the list. I have been chronically ill since about 1967. I have been diagnosed with transverse myelitis and a few other things. I have had bad periods off an on but now that I am older/old guess it has all taken its toll and so I am sick most of the time. I am really tired of being sick. You ever get tired of being sick. Well, of course you have.I suffer from a lot of spasms, pain, back pain, balance and walking problems. Oh, yes and numbness and stiffness; few more things, ugh.I saw this list and thought I would fit in nicely. I hate to tell "healthy " people how bad I feel, but I thought here no one would mind. I figure most of you feel as bad or worse than I do. Guess I wanted to have some company in my misery. Right now I am pretty miserable, but I will not let that keep me from being polite and civil and understanding of you all.I also have these hemangiomas (2) on my spine and I think they may be what is making me worse right now. My symptoms had gotten worse and so I had some new mris and they showed the hemangiomas. But, even though my symptoms are consistent with where the tumors are, the neuro thinks I am overdoing the pain, numbness, loss of bladder control, difficulty walking and all. I have had it with doctors and have about given up. My family doctor says something is definitely wrong. He is the one that sent me to the neuro. So, that is what brought me here to the sick list. If anyone should email me, they will get a reply email that they must be approved by my spam filter. Do not worry, I will approve everyone right away and you will not need to do anything.Well, thanks for having me in your group.Thanks for letting me moan. I needed to do that, but now will/must go back to my stoic old self. Boyles burg, PAhusband, 2 shelties, 1 lab

[Guest guest]

Dear ,

One of my best friends lives in Dillsburg. Talk about

coincidence.

All of us who have so much 'wrong' with our health

need a place where we can talk about what's wrong with

us or bothering us or causing us pain. I have never

heard anything but support in this group. What a

wonderful resource we have built for ourselves! Helen

works tirelessly to find resources that might help

some of us.

Welcome to a 'soft place to fall.'

; )

Willow

--- Boyles <tooniedog@...> wrote:

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

Hi,

I just joined the list. I have been chronically ill

since about 1967. I have been diagnosed with

transverse myelitis and a few other things. I have had

bad periods off an on but now that I am older/old

guess it has all taken its toll and so I am sick most

of the time. I am really tired of being sick. You ever

get tired of being sick. Well, of course you have.

I suffer from a lot of spasms, pain, back pain,

balance and walking problems. Oh, yes and numbness and

stiffness; few more things, ugh.

I saw this list and thought I would fit in nicely. I

hate to tell " healthy " people how bad I feel, but I

thought here no one would mind. I figure most of you

feel as bad or worse than I do. Guess I wanted to

have some company in my misery. Right now I am pretty

miserable, but I will not let that keep me from being

polite and civil and understanding of you all.

I also have these hemangiomas (2) on my spine and I

think they may be what is making me worse right now.

My symptoms had gotten worse and so I had some new

mris and they showed the hemangiomas. But, even though

my symptoms are consistent with where the tumors are,

the neuro thinks I am overdoing the pain, numbness,

loss of bladder control, difficulty walking and all. I

have had it with doctors and have about given up. My

family doctor says something is definitely wrong. He

is the one that sent me to the neuro.

So, that is what brought me here to the sick list. If

anyone should email me, they will get a reply email

that they must be approved by my spam filter. Do not

worry, I will approve everyone right away and you will

not need to do anything.

Well, thanks for having me in your group.Thanks for

letting me moan. I needed to do that, but now

will/must go back to my stoic old self.

Boyles

burg, PA

husband, 2 shelties, 1 lab

[Guest guest]

Dear ,

One of my best friends lives in Dillsburg. Talk about

coincidence.

All of us who have so much 'wrong' with our health

need a place where we can talk about what's wrong with

us or bothering us or causing us pain. I have never

heard anything but support in this group. What a

wonderful resource we have built for ourselves! Helen

works tirelessly to find resources that might help

some of us.

Welcome to a 'soft place to fall.'

; )

Willow

--- Boyles <tooniedog@...> wrote:

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

Hi,

I just joined the list. I have been chronically ill

since about 1967. I have been diagnosed with

transverse myelitis and a few other things. I have had

bad periods off an on but now that I am older/old

guess it has all taken its toll and so I am sick most

of the time. I am really tired of being sick. You ever

get tired of being sick. Well, of course you have.

I suffer from a lot of spasms, pain, back pain,

balance and walking problems. Oh, yes and numbness and

stiffness; few more things, ugh.

I saw this list and thought I would fit in nicely. I

hate to tell " healthy " people how bad I feel, but I

thought here no one would mind. I figure most of you

feel as bad or worse than I do. Guess I wanted to

have some company in my misery. Right now I am pretty

miserable, but I will not let that keep me from being

polite and civil and understanding of you all.

I also have these hemangiomas (2) on my spine and I

think they may be what is making me worse right now.

My symptoms had gotten worse and so I had some new

mris and they showed the hemangiomas. But, even though

my symptoms are consistent with where the tumors are,

the neuro thinks I am overdoing the pain, numbness,

loss of bladder control, difficulty walking and all. I

have had it with doctors and have about given up. My

family doctor says something is definitely wrong. He

is the one that sent me to the neuro.

So, that is what brought me here to the sick list. If

anyone should email me, they will get a reply email

that they must be approved by my spam filter. Do not

worry, I will approve everyone right away and you will

not need to do anything.

Well, thanks for having me in your group.Thanks for

letting me moan. I needed to do that, but now

will/must go back to my stoic old self.

Boyles

burg, PA

husband, 2 shelties, 1 lab

[Guest guest]

> I'm currently using my new tabletop distiller to try and obtain

essences from various plant materials. I don't know much about it

though so it's going to be an adventure.

Love to hear from all of you. Any advice is good advice. Thanks.

Hey, Welcome...I'm more of a lurker than a poster, but I love the

historical re-enactment...I have a perfume booth at the Renaissance

Faire in NOrthern Cal. When I used to do the circuit, there was a

huuuge SCA event out in Arizona, Estrella Wars...do you do that one?

Do you take your still with you? I'm looking at taking my little

copper alembic with me on my next show, I have to check the fire regs.

tho..

There's lots of really wonderful people on this list, it is very

informative, and the archives are extraordinary...use them.

Blessings and joy in your journeys

Alwyn L'hoir

Blue Moon Perfume

http://www.quantumpeace.blogspot.com

http://www.acountrywomansjournal.blogspot.com

http://www.bluemoonperfume.com

[Guest guest]

WELCOME TO THE GROUP NATAILIE;; SORRY YOU ARE SO SICK BUT YOU ARE RIGHT;; THATS WHY WE ARE ALL HERE TO LISTEN & TO HELP EACH OTHER WHERE WE CAN;;LOTS OF NEAT & CARING FOLKS IN THIS GROUP;; TAKE CARE;; \HEALING ((HUGS)) DORT FROM MICH Boyles <tooniedog@...> wrote: Hi,I just joined the list. I have been chronically ill since about 1967. I have been diagnosed with transverse myelitis and a few other things. I have

had bad periods off an on but now that I am older/old guess it has all taken its toll and so I am sick most of the time. I am really tired of being sick. You ever get tired of being sick. Well, of course you have.I suffer from a lot of spasms, pain, back pain, balance and walking problems. Oh, yes and numbness and stiffness; few more things, ugh.I saw this list and thought I would fit in nicely. I hate to tell "healthy " people how bad I feel, but I thought here no one would mind. I figure most of you feel as bad or worse than I do. Guess I wanted to have some company in my misery. Right now I am pretty miserable, but I will not let that keep me from being polite and civil and understanding of you all.I also have these hemangiomas (2) on my spine and I think they may be what is making me worse right now. My symptoms had gotten worse and so I had some new mris and they showed the hemangiomas. But, even though my symptoms are consistent with where

the tumors are, the neuro thinks I am overdoing the pain, numbness, loss of bladder control, difficulty walking and all. I have had it with doctors and have about given up. My family doctor says something is definitely wrong. He is the one that sent me to the neuro. So, that is what brought me here to the sick list. If anyone should email me, they will get a reply email that they must be approved by my spam filter. Do not worry, I will approve everyone right away and you will not need to do anything.Well, thanks for having me in your group.Thanks for letting me moan. I needed to do that, but now will/must go back to my stoic old self. Boyles burg, PAhusband, 2 shelties, 1 lab

[Guest guest]

Alwyn L'hoir wrote:

Hey, Welcome...I' m more of a lurker than a poster, but I love the

historical re-enactment. ..I have a perfume booth at the Renaissance

Faire in NOrthern Cal. When I used to do the circuit, there was a

huuuge SCA event out in Arizona, Estrella Wars...do you do that one?

Do you take your still with you? I'm looking at taking my little

copper alembic with me on my next show, I have to check the fire regs.

tho..

There's lots of really wonderful people on this list, it is very

informative, and the archives are extraordinary. ..use them.

Blessings and joy in your journeys

Alwyn L'hoir

Blue Moon Perfume

Alwyn:

First, may I say beautiful name! Is it Welsh perchance and what does it mean,

if I might be so nosy? My SCA persona is Welsh/ Norman (Viola Howl). I do

attend the Estrella Wars. You're not in the SCA if you don't!

I just received my distiller for my birthday, but I believe it is portable.

I've been using the stove top to heat it up though. I may have bought the wrong

distiller, however. I thought I was buying an alembic, but all it seems to do is

boil the ingredients and make strange-smelling, clear teas. There is no chamber

to separate the plant material from the liquid chamber.

I have a friend who does metal work, perhaps I should have him show me how

to make a copper inset for my plant material. Any suggestions Alwyn, since you

use a copper distiller too?

In service to the dream,

" What is it you plan to do with this one wild and precious life? " -- Oliver

http://www.myspace.com/violahowl http://www.flickr.com/photos/violahowl

[Guest guest]

Does sx stand for sex? The neuro thought I was exaggerating my symptoms, nothing ever said about sex. And yes, transverse myelitis is similar to ms but only involves the spinal cord not the brain too as in ms. The docs have ruled out ms. Only thing, after all these yrs TM should not take the course mine has taken. And, that is why I would like the docs to checkout the hemangiomas a bit more. The hemangiomas can cause some big time problems if they should grow. I read that they should be watch if someone is having symptoms. Seems no one but my family doc is concerned.I am going to take shark cartilage as I read it might help to shrink hemangiomas. Figure it is worth a try to see what happens. I take neurontin now and it is the pits as probably a few of you know. The bladder meds made me sick, as have most other meds I have tried.-----Original Message-----From: gettingthere35@...Sent: Wed, 08 Aug 2007 12:09:39 -0400 Subject: Re: new member

hello Welcome!

all those things sound like NO FUN!

surprised that the neuro would suggest you are overdoing the Sx? Despite the ones I've seen that I didn't like, they didn't tell me THAT!

[i'm assuming that they have ruled out the Dx of multiple sclerosis? which does have the balance, numbness, tingling, spasms, bladder concerns, and walking...

and the ups and downs

Or perhaps the transverse myelitis is similar?

but (at least if you handle them) M.S. does have drugs that are said to help...]

but anyway, regardless of Dx and Sx,

you have lots of company here!

to lesser and greater extents...

I'm one of the luckier ones..

Jean

Keep Spyware Off Your Computer - Protect your computer with Spyware Terminator!

Visit http://www.spywareterminator.com/install and find out more!

[Guest guest]

Thanks for the welcome, Dorothy. This does appear to be a very nice group of people. It is a shame we all must meet like this.But, I am glad we all found each other for the support we all need. I shall wish and pray for the best for all you out there. -----Original Message-----From: peterson.dorothy@...Sent: Wed, 8 Aug 2007 10:14:02 -0700 (PDT) Subject: Re: new member

WELCOME TO THE GROUP NATAILIE;; SORRY YOU ARE SO SICK BUT YOU ARE RIGHT;; THATS WHY WE ARE ALL HERE TO LISTEN & TO HELP EACH OTHER WHERE WE CAN;;LOTS OF NEAT & CARING FOLKS IN THIS GROUP;; TAKE CARE;; \HEALING ((HUGS)) DORT FROM MICH

[Guest guest]

Good morning, ! I believe that:

'Sx' is shorthand for 'symptoms'

as 'Dx' for 'diagnosis'

I still can't understand a neurologist thinking a patient was exaggerating symptoms! I guess I've been *really* lucky!

Actually, at least in M.S., quite often the 'sexual urge' is diminished... ;-(

HOpefully the tranverse does not share this Sx too!!

wish you had an holistic doc to help with the 'extra supplements'!

I am able (so far) to take supplements instead of drugs, BUT they were prescribed by a doc who specializes in that and could test for their effectiveness for me!

Some supplements really do work, but some do best the emptying of your bank account. And a few do damage.

I'm very glad that your doc wants to be following up on the hemangiomas! Hopefully he/she will see to it that you get the proper next steps taken!!!

as soon as you can!!??

and just cuz you have ONE major illness doesn't mean that you can't have another one causing trouble too, I keep reminding my doc!

MSers often take neurontin too.

Some MSers find they prefer learning to use a catheter; I didn't learn much about that.

The incontinent products are great nowadays, but are not the best solution always.

best, Jean

Re: new member

Does sx stand for sex? The neuro thought I was exaggerating my symptoms, nothing ever said about sex. And yes, transverse myelitis is similar to ms but only involves the spinal cord not the brain too as in ms. The docs have ruled out ms. Only thing, after all these yrs TM should not take the course mine has taken. And, that is why I would like the docs to checkout the hemangiomas a bit more. The hemangiomas can cause some big time problems if they should grow. I read that they should be watch if someone is having symptoms. Seems no one but my family doc is concerned.I am going to take shark cartilage as I read it might help to shrink hemangiomas. Figure it is worth a try to see what happens. I take neurontin now and it is the pits as probably a few of you know. The bladder meds made me sick, as have most other meds I have tried.

-----Original Message-----From: gettingthere35verizon (DOT) netSent: Wed, 08 Aug 2007 12:09:39 -0400 Subject: Re: new member

hello Welcome!

all those things sound like NO FUN!

surprised that the neuro would suggest you are overdoing the Sx? Despite the ones I've seen that I didn't like, they didn't tell me THAT!

[i'm assuming that they have ruled out the Dx of multiple sclerosis? which does have the balance, numbness, tingling, spasms, bladder concerns, and walking...

and the ups and downs

Or perhaps the transverse myelitis is similar?

but (at least if you handle them) M.S. does have drugs that are said to help...]

but anyway, regardless of Dx and Sx,

you have lots of company here!

to lesser and greater extents...

I'm one of the luckier ones..

Jean

Keep Spyware Off Your Computer - Protect your computer with Spyware Terminator!Visit http://www.spywareterminator.com/install and find out more!

[Guest guest]

YOU ARE VERY WELCOME NATAILIE;; YES THE GROUP IS AWESOME HUGS DORT Boyles <tooniedog@...> wrote: Thanks for the welcome, Dorothy. This does appear to be a very nice group of people. It is a shame we all must meet like this.But, I am glad we all found each other for the support we all need. I shall wish and pray for the best for all you out there. -----Original Message-----From: peterson.dorothysbcglobal (DOT) netSent: Wed, 8 Aug 2007 10:14:02 -0700 (PDT) Subject: Re: new member WELCOME TO THE GROUP NATAILIE;; SORRY YOU ARE SO SICK BUT YOU ARE RIGHT;; THATS WHY WE ARE ALL HERE TO LISTEN & TO HELP EACH OTHER WHERE WE CAN;;LOTS OF NEAT & CARING FOLKS IN THIS GROUP;; TAKE CARE;; \HEALING ((HUGS)) DORT FROM MICH

[Guest guest]

,

Hi my name is . My daughter kylie has been dx with for about 3 years

now. She is now 4 years old. We live in northwest indiana. Our best search for

answers is this board, you can learn a tremendous amount of info on here. If

you would like to talk or have any question that I might be able to answer, you

can e-mail me personally. steighner_41@...<mailto:steighner_41@...>.

[Guest guest]

welcome to the world of (or pfs) where questions are many and

answers are few.

many of these kids do not catch anything else...and i mean anything;

colds, bugs going around and the like. when it begins, the fevers are

scary. after testing and testing and testing and all other

possibilities have been eliminated, many are left with the pfs

diagnosis. there will be doctors who will dismiss it, those who will

have absolutely no knowledge of this syndrome and then there are the

ones who will take the time with you to help your child and your

family deal with this(yes, this is a family thing). YOU ARE THE BEST

ADVOCATE FOR YOUR CHILD. DO NOT SETTLE FOR " WAIT AND SEE " OR " IT'S

JUST A BUG. "

management strategy of the episodes is about the only consistent thing

you will find. does she like ice packs? can she take ibuprofen or

acetominophen? is she nauseated while fevering? does she prefer

certain things to drink or eat while fevering? who can stay with her

while she's fevering? etc. if your child has (pfs), you need

to have a basic plan to cope with the fevers. my son has had fevers

since he was at least 3 (it may have started earlier, but there was no

evidence of a pattern). he is now 8. he presently is taking 7.5 mg of

singulair daily. we see an infectious disease doctor every few months.

he has had 2 remissions...one of 7 months and one of 8 months. his

pattern is 16 to 21 days. he knows he is coming down with a fever

episode even before his temperature is elevated. we use zofran (and

now the generic version) for nausea and ibuprofen and acetominophen to

keep the fevers from being so high. we keep a bunch of ice packs (the

gel type)...smaller ones for his head and larger ones for his torso.

the gel packs frequently have elastic and velcro to allow you to keep

the packs against the body. he likes ramen noodles, caffeine free

coke and ginger-ale while he is fevering. he doesn't sleep well while

fevering and prefers to sleep in our bed instead of his own so he can

be with his dad or me. he is very clingy during the fevers and after

the fevers, he is a very independent 8 year old. the fevers typically

last 48 hours and when they are over, they are over...no recovery lag.

LEARN ALL YOU CAN about this...there isn't a whole lot out

there...THEN EDUCATE all the people your child will come in contact

about (pfs). FIND A DOCTOR WHO IS KNOWLEDGEABLE about .

KEEP A RECORD OF THE FEVERS.

this may not be the what you are looking for in the way of information

but it comes at the hand of several years of experience.

i wish your daughter, you, and your family well. this is not an easy

road to walk but there are others here on the same road.

ryder " sizzlin' sister " martin, mom to ross, 8 since age 3

[Guest guest]

hi there . with my two cents things are still the same at 13 years old.

at least twice a month and even more when there is to much going on.

sometimes he is just to run down to go to school. with the whole mouth and

gland

with over all aches he doesn't eat enough to keep going with out laying down for

a while so i keep him out the first day. i have a note form the dr. in the

office stating that he is to be excused for one to three days at a time? As

far as a 504 you will need to start that in the forth grade because it really

hard to get one in the middle school. The younger grades are great with

cronicly ill children but the upper grades are less personal and not as

understanding

of an invisible illness. i have noticed that the temps don't always get as

high because he knows now that feeling and he will go get in a cool bath untill

he feels better . thanks char

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

See

what's new at http://www.aol.com

[Guest guest]

Thank you for responding Ryder " sizzlin sister " .? I am very interested to talk

to someone with a school aged child.? How do you deal with the frequent absences

from school?? My daughter deals with the episodes fairly well as long as she has

the fever reducer in her.? She doesn't usually have nausea?and eats and drinks

fairly well, she also loves the Ramon noodles when with fever.? Should I send

her to school?? The school said since she is not contagious with fever she may

go, they will administer fever reducers (with doctors order, which I got) when

necessary. Is she more incline to pick up and illness when with fever? I

understand the children are less likely to catch the common childhood ailments,

but is that when they are not with fever, or does it include fever episodes?? Is

the fever taxing on the body, is school too demanding?? My daughter is only 5

and loves kindergarten, she hates to stay home.? When the Motrin kicks in, and

she is feeling relatively well, do I let her go if she wants to? Or will the be

to stressful for her body and make her more sick? ? I also worry she has missed

like 7-8 days so far.? She has been getting fever every 2-3 weeks for three

days. Do the frequency of episodes decrease when the child gets older?? Does the

duration of fever lessen with age?? What about the temperature, does that

decrease at all.? I know when a child gets 103 it doesn't affect them quite a

much as when an adult has such a high fever.? What happens when the get to high

school do you implement a 504 education plan? Thank you for listening and if

anyone has answers, please respond??

[Guest guest]

I don't understand why every time I write a message, and It gets posted, every

sentence has a question mark (this is not a question).? I realize the sight is

monitored; but do they edit the entry's?? Does this happen to others is it a

glitch in the computer?? Well, just for the record I do not write with all those

question marks, nor do I double punctuate.

As for my question:? If a child is not as?susceptible to colds and

viruses, why would you need a flu shot?

[Guest guest]

Wow, great post.

Nate is 11 and is just now preliminarily diagnosed with .

I've learned to keep a detailed log of fevers, mouth sores,

headaches, etc as well as day to day aches and pains.

Nate's fevers started in March and August I realized there is a

pattern. He had a Hepitis A shot in Feb but everyone says that is

not the cause. We have just started this so ...

[Guest guest]

Edie - try to hang in there. Sounds like you were pretty lucky to find

that doctor at the ER who could help you.

Read all that you can - and non us know what causes it. There is no

known cause . . . but for some reason we are all in this boat together.

Hannah

Aidan - 4 - fevering 2 1/2 years

Sid - 6

[Guest guest]

Hi Edie

You have found a good place for information and support. I read

these emails every night and it gives me a sense of relief and

assurance that we are not alone. My Celine, 2.5, was just diagnosed

in September. Sometimes I talk to people about it and they almost

think I'm crazy. But, it is real. There are a lot of variations to

the syndrome, so this is a nice way to get a variety of experiences.

Celine hasn't had any medication yet. We have not decided a course

of treatment... But we are armed with Prednisone for a family

vacation next week.

My best advice right now is read and ask any questions you might have

and journal Ryleigh's symptoms and fevers.

I will keep your little one in my prayers. We all have a long road,

but, we're able to have this site (thanks Fran!) to do it together.

Take Care,

(mom to Celine 2.5 fevering since June 07)

[Guest guest]

My main concern is the 30 doses of motrin/tynelol she has to get every month

when she fevers. Her lipps also get blue right before she fevers. I just get

frustrated becuase everyone other parent I talk to say they have never heard of

this and think it is a virus. One of our sepcialist asked if we would consider

have her tonsils and adnodes removed. Has anyone else considered or done this?

Edie

Ryleigh (2yrs old fevering 1 year)

[Guest guest]

Hi Edie

Removing tonsils and adenoids is the only known 'cure' for . Having said

that, it doesn't ALWAYS work. Our rheumatologist thinks the success rate is

close to 100%. The ones where it doesn't work, according to her belief, is

because they were falsely diagnosed with . I guess the biggest difficulty

is diagnosis as there is no test one can run to determine it's definitely .

Emma is 2 yrs 4 months and has been fevering since she was 11 months old. We

have ruled out cyclic neutropenia, juvenile arthristis and HIDS. The other

periodic fever syndromes don't really fit her profile. Her main symptom are the

fevers. I have never detected any mouth sores. Apparently this is not uncommon

in kids although most of them do get mouth sores. So diagnosis by

exclusion of other diseases is . So we have now decided to go ahead and

have tonsils and adenoids removed. The date for the surgery is 28th November. I

am very nervous but confident that it's the right decision. It's such a personal

decision though. For us, constant medication is just not an option if we can

avoid it. Other families prefer that option to surgery and I can also understand

why - we just feel differently and prefer surgery. Oh and the other thing about

success rate of tonsillectomy in kids is that although it almost always

takes the fevers away, no one

really knows if that's going to be permanent because the studies that have been

done are all quite recent. Anyway even if we can give Emma 5 or 6 years 'off'

from fevering every month then to us the surgery has been worth while.

I'll keep everyone posted on how it goes!

Take care

Inga