....

June 13, 1999

What did you find through the CDC to show your husband why you should not

vaccinate your daughter?My husband just won't listen to me at all.

Sara

June 13, 1999

Sara,

What I did was whenever I read a book (ie. Neil 's books) then I

would do my best to locate the source cited (often CDC or AMA documents)

then I would point them out and how they were not misrespresented. For

example, I got the CDC guidelines for Hep B after my doctor told us that

if we did not get the next Hep B vaccine we would have to start the

whole series again. Within the CDC guidelines it specifically said that

it was best to stay on schedule but that the series did not have to be

restarted. Score one for choice:)

You can also get the package insert and look up the ingredients. Check

them out ont he web. For example, thimerasol (anti-freeze) was banned as

of Oct. 22, 1998 by the FDA in all over the counter medication. Check

it out in the FDA site.

Back track as many sources as possible. Right now you have to act like a

detective. After several supporting cases it gets easier.

Sarau71571@... wrote:

>

> From: Sarau71571@...

>

> What did you find through the CDC to show your husband why you should not

> vaccinate your daughter?My husband just won't listen to me at all.

> Sara

>

> ------------------------------------------------------------------------

> Looking to expand your world?

>

> ONElist has over 165,000 e-mail communities from which to choose!

--

@...

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

We Must Have The Freedom To Choose & Respect Everyone's Choice

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

Any information obtained here is not to be construed as medical

OR legal advice. The decision to vaccinate and how you

implement that decision is yours and yours alone.

August 15, 2002

Guin..thanks for the encouragement. I have actually had 3 other replacements done...this will be my fourth! But the other times we ran into complications...and I think that is why I have been so nervous. But logically, what are the chances of incurring the same set of circumstances. So, I am thinking very positively and am sure that this one will run smoothly...piece of cake...right?

I do appreciate your support...as the date arrives I probably will get a bit nervous, but with you guys' love and humor...I can get through this...no problem! Thanks again! love,

August 15, 2002

, the replacement

will be a breeze. Since they will not change your leads, they give

a drug (versed) that put you to sleep and helps you not to remember - so

it is very simple to wake up from this drug - in fact I did - during surgery...

Not to worry, I woke up enough to feel them make the incision, I said ouch

-- surprised the heck out of them, they said you feel that? I said

YES, they waited a minute, started again - I said ouch -- they put me waaaaay

out, cuz that was the last thing I remember! It was not traumatic

at all, I was in lala land, but conscious enough to know what was going

on. Well I recovered in two hours and was gone! In by 10:00,

out by 2:00!!! The leads were not changed, so it was a simple incision,

the old unit out, the new one in. Mine is implanted under the muscle,

so since the pocket was already made and healed (6mos before), there was

only the slight pain at the incision site. No restrictions!!

Life as usual!

A vacation afterwards

is the answer!!!

Good luck to you,

guin

healthyhart2000 wrote:

Hi everyone! Wanted to say hello and give you

the latest update on

my procedure...or surgery...they have scheduled me to do the

replacement in the first week of September...which thrilled me

because my family vacation is the 21st!! They also told me that since

they didn't have to do any adjustment to the leads, I should be in

and out of there in a day..so, sounds fairly uncomplicated!! Then a

few short weeks later..I will be sitting on the beach, watching my

children chase the waves...sipping a mai-tai (my tie..not sure of the

spelling but,you know what i mean) and reading a good book! I can't

wait! Get this procedure over with and rewarded with a vacation...I

think it should be mandatory for all of us!!

Well..hope this finds you all doing well...I think of you all

often..and keep you in my heart. Love,

August 15, 2002

Guin, she actually lives in Hill...which is South of San ...but she knows how much i love the Bay area we always go up there and stay the week. I love the theatre..and the restaurants along the wharf...then we go to Sausilito and check out the antique stores, and coffee shops. And the last time I was there we drove up to Bodega Bay...what a gorgeous drive. I truly love the whole area..and the average temperature in San Fransico is like 69 degrees.. or so I am told...which beats the heck out of the summer from Hades we are experiencing!!

Anyway, where are you from where she is...we probably have been close to each other and never knew it! I go out to see her about every 6 months or so....maybe next time we could make plans to meet..would love that! take care, love,

August 15, 2002

Yes , I know what ya mean - the more ya know, the scarier it is!!

But you're what more could go wrong!? This one will be a peice of

cake, because you deserve it!

~guin

P.S. Where in No CA does your friend live?? I grew up 40

miles north of SF and now live about hour so/east in a rural area on 20

acres -- love the space, trees, and pastures!

hartofgold1a@... wrote:

Guin..thanks

for the encouragement. I have actually had 3 other replacements done...this

will be my fourth! But the other times we ran into complications...and

I think that is why I have been so nervous. But logically, what are

the chances of incurring the same set of circumstances. So, I am

thinking very positively and am sure that this one will run smoothly...piece

of cake...right?

I

do appreciate your support...as the date arrives I probably will get a

bit nervous, but with you guys' love and humor...I can get through this...no

problem! Thanks again! love,

Please visit the Zapper homepage at

http://www.ZapLife.org

August 16, 2002

Hey ;

I am about 1 hour North of her..... I grew up about 2 minutes

from Bodega Bay, in Petaluma! I am now between Fremont & Pleasanton.

You must pop in here when you are in the area! We have a great

little town that consists of the School (K-8 with about 185 students),

the Post Office, Antique Store, Cafe, restaurant, Bistro/winery!!!

Don't blink - you'll miss us!

~guin

P.S. Have fun at your High School Reunion -- it will be fun!

Just went to my 25th last year! Sort of a dud - not many people (about

1/8 of the class at best).

hartofgold1a@... wrote:

Guin,

she actually lives in Hill...which is South of San ...but she

knows how much i love the Bay area we always go up there and stay the week.

I love the theatre..and the restaurants along the wharf...then we go to

Sausilito and check out the antique stores, and coffee shops. And

the last time I was there we drove up to Bodega Bay...what a gorgeous drive.

I truly love the whole area..and the average temperature in San Fransico

is like 69 degrees.. or so I am told...which beats the heck out of the

summer from Hades we are experiencing!!

Anyway,

where are you from where she is...we probably have been close to each other

and never knew it! I go out to see her about every 6 months or so....maybe

next time we could make plans to meet..would love that! take care,

love,

Please visit the Zapper homepage at

http://www.ZapLife.org

April 27, 2004

Yep tomorrow morning at nine. Thanks for remembering. And keeping me in your thoughts. Hopefully it will go smoothly. I'm getting it done at the adult hospital this time so I'm a little nervous.. adult doctors just aren't as nice as kid doctors.. We'll see how it goes. Thanks again.

Lots of Love

April 28, 2004

Hi :

Please let us know how your appointment went today. How the adults were just

as nice:) Hope this is the last probe test for you.

Take care.

Patty

April 28, 2004

they werent just as nice.. I hate the adult clinic. the woman was so rude!

And they made me wait two hours..

lisa

April 28, 2004

In a message dated 4/28/04 3:01:29 PM Eastern Daylight Time,

bncknwurnumber@... writes:

<<

they werent just as nice.. I hate the adult clinic. the woman was so rude!

And they made me wait two hours..

>>

Hi :

Well, that is a shame! Have to wonder sometimes when certain people go into

medicine when they don't seem to like, understand, etc. people. Sorry she was

so rude. Two hours:( How is the probe feeling? Keeping it in again, no

vomiting?

Take care.

Patty

April 28, 2004

The probe is fine. My throat is a little irritated..And it was weird having

to go to class with it in again. But Im doing ok. Its just weird I guess they

follow a different procedure. At the childrens hospital they put it in

really quick..make you drink a minimal amount of water and within five minutes

its

in. The pre-measure it to avoid having to pull out any extra tube since thats

a really back feeling. I enjoy that way. At the adult clinic they first put

this gross numbing jelly up your nose and ask you to suck it back.. the spray

lidocane into your throat (it tastes like rotten bananas)... and slowly inch

by inch put in the tube. She made me drink almost two glasses of water while

swolling the tube (yes that's a great way for me not to throw up). She pushed

way to much in and then slowly pulled out the extra which added to me wanting

to gag. I hated her.. and one of the nurses nicely stated..wow for being so

young you sure have a lot of medical problems..why thanks for pointing that one

out..Like I needed another reminder of it. All in all they are not my

favorite people right now.

April 28, 2004

:

I am soooo sorry. As if you needed that. Did you get her name? I would

definately write and/or call and complain. There is no excuse for

behavior like that.

Hope that the time passes quickly and you'll be probe-free before you

know it.

and Rob 15 Spondy

On Wed, 28 Apr 2004 14:55:26 EDT bncknwurnumber@... writes:

they werent just as nice.. I hate the adult clinic. the woman was so

rude!

And they made me wait two hours..

lisa

April 29, 2004

Geez that sounds like a horrible experience and to have the feeling of

the nurse (after all they did already) pulling it back up! I'm with you, I'd

prefer the children's method much better. When do you get it out?

Take care.

Patty

April 29, 2004

I got it out this morning. I had a really nice nurse!! Not as nice as the

ones at Lucille Packard Childrens.. but she was pretty nice. I'm glad to have

it out.. I had a horrible time sleeping with it in yesterday...

July 11, 2005

Thank you so much!!!!!

~

TerryGoheen <goheen@...> wrote:

A little late to the plate but wanted to say congrats on being a " Buffmother " ...

I loved your story!!! Congrats again and keep inspiring!!

Juls

July 21, 2006

I will keep that in mind for nausea which she gets with mtx..but not

this time because of the help from Zofran.

Right now her problems aren't nausea but more stomach pain and

heartburn issues which apparently has been caused by her use of

NSAIDS.

I am going to pick up the pepcid complete and see if that will help

her. I think she might be getting a little better.

(aundrea almost 11 systemic jra)-

-- In , Robbin40@... wrote:

>

> Helen,

> First rule on the Old remedies is Ginger Ale. It has a

settleing affect to

> the stomach.

> If your stomach feels quizzy drink some. They have Ginger cookies

also. In

> the Winter time I keep 2 bottles around here just in case.

lololol.

> Robbin

>

July 21, 2006

Our family loves to watch the show " Myth Busters " . They actually tested all the

over the counter anti-nausea medicines and natural treatments with a couple of

the guys who get seriously seasick/motion sick. They tried the sea bands etc.

but ginger was the winner. It really worked so worth trying. Next time I fly I

am going to try it since I got so sick. So, out of all of them that is what I

would try.

e

Ray <leslie@...> wrote:

Yes,

I have used them myself....they do work. But what about the sea bands.

I know that they help with motion sickness...would they help with the

nausea? If you had them to try....maybe. It would help with the nausea

that comes with the dizziness.

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Friday, July 21, 2006 11:15 AM

Subject: ....

I saw someone mention ginger ale to help sickness and it reminded me

that Nicks old rheumy ( the one who prescribed the zofran ) told me

that you can actually buy ginger tablets that help with nausea. It

might be something else worth looking into.

hugs Helen and (8.systemic)

July 21, 2006

I can speak from experience here. When I was pregnant with , I

had morning sickness through almost my entire pregnancy. I tried

everything that was safe to try, including the sea bands (didn't do

much). Good old ginger ale was the best for me too....that and saltine

crackers. To top it off, I had to fly a lot for my job within the state

in a small private plane. If I didn't have the ginger ale with me, I

never would have made it.

Kathy

_____

From: [mailto: ] On

Behalf Of bound for london

Sent: Friday, July 21, 2006 2:25 PM

Subject: RE: ....

Our family loves to watch the show " Myth Busters " . They actually tested

all the over the counter anti-nausea medicines and natural treatments

with a couple of the guys who get seriously seasick/motion sick. They

tried the sea bands etc. but ginger was the winner. It really worked so

worth trying. Next time I fly I am going to try it since I got so sick.

So, out of all of them that is what I would try.

e

Ray <leslie@...

<mailto:leslie%40blueribbontravel.com> > wrote:

Yes,

I have used them myself....they do work. But what about the sea bands.

I know that they help with motion sickness...would they help with the

nausea? If you had them to try....maybe. It would help with the nausea

that comes with the dizziness.

________________________________

From: <mailto: %40>

[mailto: <mailto: %40> ]

On

Behalf Of hburger64

Sent: Friday, July 21, 2006 11:15 AM

<mailto: %40>

Subject: ....

I saw someone mention ginger ale to help sickness and it reminded me

that Nicks old rheumy ( the one who prescribed the zofran ) told me

that you can actually buy ginger tablets that help with nausea. It

might be something else worth looking into.

hugs Helen and (8.systemic)

July 21, 2006

There might be something to that pickle juice......maybe the salt? I know

that after I have a migraine I always crave salty foods. Never drank olive

juice....but craved black olives when pg with Luke...I would eat cans of them!

Kathy

Re: ....

Kathy,

Being pregnant with man every morning was something else. The Tea

and Saltines was good. I never could handle the taste of Ginger Ale. I also

drank Olive Juice lololol. My Son had a few times with his stomach and when

his Stomach acted up. He asked for Pickle

juice. Dang that would have ran my blood pressure up. But this is what he

took for the Sick Headaches. lololol Today if he has one. You see him go for

that Pickle juice lolol

Robbin

June 23, 2007

Well..

According to research up here the proper documentaion wasnt put with it. Also

they send to another canadian and no problems .. SO WHY ME

THe nightmares...EVERY NIGHT AT 1130 or within 1.5 hour of goig to bed.

They did kinda start week 3 into the meds.. but not every night.

I think Kiara is doing the 1 days flares quite often.

NO big cycles..

We are to return Aug but the calendar hasnt been opened for then.

Kiara is getting lots of leg pains and arthritis. ONe night kiara tried to play

wiht friends and boom.. she sobbed for 5 hours that night.

GROWL

We whould get them to write each other .. plus id love to start talking to you

more

vanessa

finally a diagnosis, TRAPS r92Q gene/mimics

Hello, My son Stone, age 6 has had fevers as far as I can remember

April 2006. He may of had them previously but I really never

noticed. My husband noticed the fevers in December 2006 and noticed

them to be every month, and I didnt notice. I am a stay at home mom

of three. Stone age 6 is our oldest. So when he started

kindergarten and missed alot of days each month, I realize something

was going on since my other children never got the fevers. Last

summer I just thought he was swollowing too much water from the pool

and catching a virus. I did go back to work fulltime April of 2006

and quit two months later because of his fevers. When he started

complaining of stomach pain, headaches in the fall of 2006 thats when

my doctors did cat scans, blood tests. My doctor did not give me the

run around...she sent me to a Infectious disease specialist after he

had three fevers, under her care, red eyes at onset of fever, rash on

his bum, stomach pain and headaches , no mouth sores at that time.

Right now he has a mouth sore and ankle pain which he has never ever

had until NOW. (very odd). He had his first fever a few days ago

since diagnosis of TRAPS and I gave him Predinsone 6ml- 40lbs. Its

been two days and no sign of fever, some stomach pain. He is

normal. I am so happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the cleveland clinic they are very " test happy " as I will call it.

They dont fool around and will jump to prescribe a test or have a

specialist look at the problem... My general peds doctor is very

seasoned and proactive in her approach.

We recently moved here to Cleveland and I know we would of not gotten

this diagnosis as soon and precisely. The Cleveland clinic system is

so much different and better then where we came from. We are blessed

to have moved here, even though I didnt want to! (job)

This doctor, Dr. Haaskas specializes in reoccurant fevers,

TRAPS//fmf etc. He has three cases in Cleveland and is going to

NIH this Fall and will have us go to participate in a study if all

works out. (to be discussed on Monday at our treatment plan visit).

We had DNA testing and of course many other test previously. Cat

scan, blood work during a fever and not when fevering. And a

colonscopy, endoscopy scheduled but cancelled (thank God!)due to the

diagnosis of TRAPS which mimics Pfapa we were told.

There is hope. If anyone is interested I will post our treatment

outcome/plan to treat this life long genetic disorder.

A visit to the cleveland clinic doctor for diagnosis is well worth it

if you can! Dr. Haaskas is the man to see.

mamarabbit05@...

N. Ridgeville Ohio

June 23, 2007

Hey ,

Well I just found out some news on Nicolas, they ran

some test on Nicolas and found out that he has CHron's

disease, his liver function has a couple

abnormalies,IgE is really elevated along with his

white blood cells they are still waiting on some other

test to come back too. Dr. Kastner did not agree with

the medication they wanted to start nick on but now he

may have a different out look at things now, its 6 MP

medication. We still don't know what else is going on

though we seen an immunologist and he is waiting on

the cheif immunologist at Chicago Children's hospital

but he thinks he has some answers...

Well keep me posted!!!!

--- Bisson <proudmom@...> wrote:

> Well..

> According to research up here the proper

> documentaion wasnt put with it. Also they send to

> another canadian and no problems .. SO WHY ME

> THe nightmares...EVERY NIGHT AT 1130 or within 1.5

> hour of goig to bed.

> They did kinda start week 3 into the meds.. but not

> every night.

> I think Kiara is doing the 1 days flares quite

> often.

> NO big cycles..

> We are to return Aug but the calendar hasnt been

> opened for then.

>

> Kiara is getting lots of leg pains and arthritis.

> ONe night kiara tried to play wiht friends and

> boom.. she sobbed for 5 hours that night.

> GROWL

> We whould get them to write each other .. plus id

> love to start talking to you more

> vanessa

> finally a diagnosis, TRAPS r92Q

> gene/mimics

>

> Hello, My son Stone, age 6 has had fevers as far

> as I can remember

> April 2006. He may of had them previously but I

> really never

> noticed. My husband noticed the fevers in December

> 2006 and noticed

> them to be every month, and I didnt notice. I am a

> stay at home mom

> of three. Stone age 6 is our oldest. So when he

> started

> kindergarten and missed alot of days each month, I

> realize something

> was going on since my other children never got the

> fevers. Last

> summer I just thought he was swollowing too much

> water from the pool

> and catching a virus. I did go back to work

> fulltime April of 2006

> and quit two months later because of his fevers.

> When he started

> complaining of stomach pain, headaches in the fall

> of 2006 thats when

> my doctors did cat scans, blood tests. My doctor

> did not give me the

> run around...she sent me to a Infectious disease

> specialist after he

> had three fevers, under her care, red eyes at

> onset of fever, rash on

> his bum, stomach pain and headaches , no mouth

> sores at that time.

> Right now he has a mouth sore and ankle pain which

> he has never ever

> had until NOW. (very odd). He had his first fever

> a few days ago

> since diagnosis of TRAPS and I gave him Predinsone

> 6ml- 40lbs. Its

> been two days and no sign of fever, some stomach

> pain. He is

> normal. I am so

> happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

> At the cleveland clinic they are very " test

> happy " as I will call it.

> They dont fool around and will jump to prescribe a

> test or have a

> specialist look at the problem... My general peds

> doctor is very

> seasoned and proactive in her approach.

>

> We recently moved here to Cleveland and I know we

> would of not gotten

> this diagnosis as soon and precisely. The

> Cleveland clinic system is

> so much different and better then where we came

> from. We are blessed

> to have moved here, even though I didnt want to!

> (job)

>

> This doctor, Dr. Haaskas specializes in reoccurant

> fevers,

> TRAPS//fmf etc. He has three cases in

> Cleveland and is going to

> NIH this Fall and will have us go to participate

> in a study if all

> works out. (to be discussed on Monday at our

> treatment plan visit).

>

> We had DNA testing and of course many other test

> previously. Cat

> scan, blood work during a fever and not when

> fevering. And a

> colonscopy, endoscopy scheduled but cancelled

> (thank God!)due to the

> diagnosis of TRAPS which mimics Pfapa we were

> told.

>

> There is hope. If anyone is interested I will post

> our treatment

> outcome/plan to treat this life long genetic

> disorder.

>

> A visit to the cleveland clinic doctor for

> diagnosis is well worth it

> if you can! Dr. Haaskas is the man to see.

>

> mamarabbit05@...

> N. Ridgeville Ohio

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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June 25, 2007

have you tried pred for the break thru pain? My understanding is that it is

still inflammation therefore warrants a call to the doc about pred. I can not

remember if Kiara has taken Pred before...sorry....but that's what we have do

some nights....

furthermore maybe you need to remind nih that you are flying from Canada

incurring great expense and need to book so you need a DATE to hell with the

calendar not being open yet...those of us whom have been traveling for years

need to start saying hey wait a minute we should get to book at our current

visit when we come back then they can book new patients once the calendar opens!

That drive me nuts.....Sorry if this angers anybody but it is frustrating when

you have a child already in at NIh and you make the trip every 3-4 months to

hear that the calendar is not open yet...the you find out the calendar is

full!!! UGHHHH