new to group

[Guest guest]

In a message dated 10/17/02 6:45:07 AM Central Daylight Time,

mariflor@... writes:

> . Is

> there a way to get to the Soul Sisters site you are referring to and that I

> want to go to?

>

>

This page tells about the group and lets you read a few postings. Good luck!

soulsistersoapers/

Sage

[Guest guest]

In a message dated 10/17/2002 4:45:23 AM Pacific Daylight Time,

mariflor@... writes:

> <soulsistersoapers@...>:

>

Hi ladies I sent an e-mail to this address and was told I had to join the

group to make contact. There was information in joining this list provided.

Shirley Ann

[Guest guest]

Thanks Lori,

I'll check them out.

Re: new to group

> To all who were looking for the Soul Sisters Soapers

> site:

>

> soulsistersoapers/

>

>

> ~ Lori

[Guest guest]

-did you look it up under google search or dogpile.com or ask.com

for the soul-sisters site? I know with google they describe each thing

before you click on it~just a thought! Misty

http://community.webtv.net/mpw98/ForeverYoursATouch

[Guest guest]

Thanks for the information on the soulsister site. I've been there and have

applied for membership to their group. Even though I am a Caucasian woman, this

is where most of my interest lies at the present. The clients of the Salon that

carries my products are mainly women of color so I'm trying to develop products

for their needs. I'm hoping they can give me some insight. Thanks for the

information again.

Re: new to group

Thanks Lori,

I'll check them out.

[Guest guest]

, Welcome to the group. I was to just be there to you areas for a

conference a few weeks back. I to be an adult with HFA. I to live in Ohio. I

to met a few from you areas who to be to have support group in you areas and

did be to leave a sample book of my poetry to them . I to think one of the

peoples I to met were a person named too.

Sondra

[Guest guest]

Hi ,

Welcome to the group. My situation sounds very similar to yours. My

daughter is almost three now, but I knew something wasn't right from

the day she was born. She screamed incessantly and was very sensitive

to sounds and lights. I would imagine that your daughter will receive

several different types of therapy, including some type of ABA (applied

behavioral analysis) and/or pivotal response training. At her age,

these won't look like much other than playing. My daughter's

therapists bring toys and just try to engage her and stimulate

language. It's not uncommon that your daughter only has two words.

Mine still only says " Mama " and that's it. Most autistic children, if

they are going to speak at all, usually don't until around 4 or 5 yeas

old. Her therapists might try sign language or PECS (using pictures to

help her show you what she needs or wants). She will probably also get

sensory integration/occupational therapy, depending on her needs. It

is a lot to digest, I know. Plus you have two other kids, and one is a

baby! I could never handle that. I only have one child and I will not

be having any more. It wouldn't be fair to or the new baby.

Please feel free to e-mail me any time. Our group is very supportive

and we're all in this together.

:-)

On Sunday, February 2, 2003, at 08:12 PM, jpatgal66

<jpatgal66@...> wrote:

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we will

> get wrap around service, at 30 hours per week in home. I know nothing

> about how they teach a child at her age. Im not even sure why type of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

>

>

<image.tiff>

>

>

>

[Guest guest]

Hi ,

My daughter is 17 months old. We took her to see the neurologist at

15 months. She was always a sweet, easy baby but I felt like if one

other person said " She's so quiet! " , I was going to smack them! Her

main symptoms were sensory, few words, poor imitation, and poor non-

verbal communication (she doesn't point).

We live in an area where services are extremely poor. I've started

Early Intervention and so far all they've done is come out and show

me pictures of sign language. We got an OT evaluation and I got the

feeling the therapist was doubting the diagnosis (she's a friendly

little girl). I've pretty much convinced my husband at this point

that we should move. Even if we were filthy rich (we're not and

rapidly losing our savings), we wouldn't be able to find enourgh

services in our area.

I've been through all this once before. My son (5) has PDD, symptoms

of hyperlexia, and a tentative Asperger's diagnosis. His

pediatrician put me off for a year and a half with the " he's too

smart to have autism " crap. He goes to a typical K-4 (mornings only),

gets speech 2 x/week, and is FINALLY getting ready to start OT.

That's it! I've already been warned that he probably won't get

anything for the summer.

Anyway, I'm new to the list as well. Our ped. neurologist put our

daughter on the GFCF diet and Kirkman's Spectrum Complete vitamins.

He was optimistic that she would be okay in the future because of her

young age. E-mail me if you'd like more info.

Vicki

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out

the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we

will

> get wrap around service, at 30 hours per week in home. I know

nothing

> about how they teach a child at her age. Im not even sure why type

of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here

in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her

to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was

at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism

group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

[Guest guest]

,

This is a good group to be apart of and you should find help here!

If you're interested in pursuing the gf/cf diet, feel free to email me

privately. My daughter has been on it since 8/99.

joy

Mom to , 7 yr HFA, and , 9 yr, NT

" jpatgal66

<jpatgal66@earthl

Autism_in_Girls

ink.net> " cc: (bcc: Joy

Insinna/Content/Element K)

<jpatgal66 Subject: New

to group

02/02/03 11:12 PM

Please respond to

Autism_in_Girls

Hello everyone,

My name is , I'm from Pittsburgh Pa, I have 3 children,

who is almost 3 that is 20 months old, and Evan who is 7

months old. We were told when was 17 months old that she has

Autism. When we were told that she had Autism they shoved us out the

door with no help, just a few papers of people to call. All of this

is new to us, I have early intervention started for her, and we will

get wrap around service, at 30 hours per week in home. I know nothing

about how they teach a child at her age. Im not even sure why type of

teaching they will even use on her. I'm looking to talk with other

moms and dad, I have a VERY open mind. Im looking for advise, and

learn as much as i can and as fast as I can. I want to do what is

right for her, and not waste time on things that will not work for

her. I have read about the GF/CF diet, I may try it, she has a very

limted diet as of now. She will be going to a feeding program here in

Pittsburgh once a week. makes a good bit of eye contact, she

loves to play with me, only says two words, Im very worried

about that too.

When was born, 12 hours after she was born I should say she

began to scream, and scream, about 12-14 hours per day, I took her to

many doctors, and many trips to the ER, and I was told many things,

at around 3 months of age, I took her to childrens hospital I was at

my wits end, I was given zantac to give her and she shut up by the

2nd dose, I remember one night at one of the many ER trips that a

doctor told me that " these type " of kids are VERY VERY smart and

that they make good doctors, and that if I can wait it out things

will be just fine, and by the way I like the way you got your hair

cut since I seen you the last time. So here I sit on and Autism group

list. Im sorry I've gone on and on. Im just lost.I look forward to

talking and learning from others,

, Pittsburgh Pa

[Guest guest]

, it sounds as if you are off to a wonderful start with the

sheer number of hours of therapy you will be receiving, as well as

the early age you began the therapy!

I'm gonna list some books that have helped me have better

understanding of the autism thing. You might be able to find some at

your local library. I also purchase many from www.half.com as they

are used books.

The primary way of teaching autistics today is usually called either

ABA (applied behavior analysis) or discrete trials. This method has

been developed by Dr. Lovaas from California. It is a form similar to

Pavlov's dog experiments where he rang a bell when he fed them, then

stopped giving the food to them and they still had increases of

saliva when they heard a bell. A book I found invaluable for

understanding this is " Let Me Hear Your Voice " by Maurice.

As far as the GFCF diet goes, my daughter has used this with great

success. I have seen estimates that anywhere from 30% to 70% of

autistics benefit from this diet. It is overwhelming to begin,

however the results can be phenominal. Still others use dietary

enzymes in the place of the diet, but it remains controversial as to

which method is best. Some books explaining the diet are " Unravelling

The Mysteries of Autism and Pervasive Developmental Disorder " by

Karyn Seroussi and " Special Diets for Special Kids " by .

They have a website www.autismndi.com, as they work together. There

is also a gfcfrecipes message board at that has been

wonderful for me.

As far as the issue of chelation goes, this again is very

controversial. There is a message board autism treatment that deals

with this very issue and a lot of parents are chelating their kids. I

found the most help in understanding this issue by ordering a video

from www.unlockingautism.com It is the DAN! fall 2001 conference

tape. DAN! stands for Defeat Autism Now and they have a list of all

the current issues that seem to help autism.

To help understand the way autistics think, " Thinking In Pictures " by

Temple Grandin has been wonderful. She is an adult autistic that has

had wonderful academic success.

Okay, since I probably just majorly overwhelmed you, I want to give

you some advice that has been wonderful for me. Allie was 18 months

when I told my aunt I was afraid she had autism. She said to

me, " Debi, you've got to attack it with everything in you. " Another

mother with an autistic son said, " Get down, get up, and get going. "

Finally, Andy Cutler best states it as this: parents have to take

care of themselves before they can give the best attention to their

kids. " So, please, allow yourself time to absorb everything. It took

me a year to learn everything I just gave you in the above

paragraphs. I have also been through significant grief and fear for

my Allie's future. Allow yourself and your family to grieve openly

with each other. But while you are dealing with the sadness, remember

that you will see better days, they will come! Also, every few days I

say out-loud, " God is bigger than autism. Jesus is bigger than

autism. " It helps me to get perspective.

HTH,

Debi

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out

the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we

will

> get wrap around service, at 30 hours per week in home. I know

nothing

> about how they teach a child at her age. Im not even sure why type

of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here

in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her

to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was

at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism

group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

[Guest guest]

Welcome! You will find lots of sharing, caring and information to

help you here.

www.EPEConline.com

www.wrightslaw.com

Both of these websites offer direction and help, also search with

your web engine.

My daughter ie was diagnosed at 3 1/2, we got her speech therapy

and OT, had her tested by the school system, got her into pre-school

4 days a week and then they provided the speech and OT and we saved

on bills.

Work on letters,colors, numbers 1-10; everything you do or give her,

tell her what your giving her or telling her i.e. " you want a

drink " , " you want your Barney toy " etc. " we're going to the store for

milk " , " so n so is coming over " etc.

Welcome Again, look forward to sharing with you.

, ie's Mom

Hampshire County, West Virginia

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out

the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we

will

> get wrap around service, at 30 hours per week in home. I know

nothing

> about how they teach a child at her age. Im not even sure why type

of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here

in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her

to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was

at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism

group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

[Guest guest]

Hi

Welcome to the list. My name is Tracey and our 10 year old daughter

Skylar was diagnosed autistic at the age of 3. We live in a small rural

community but are very lucky to have quite a few services available to

us. I know it is pretty scarey when you first hear the dianosis. This

is a great list to vent, get opinions, advice, and support. I am sure

you will be glad you joined.

Tracey

" jpatgal66 " wrote:

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we will

> get wrap around service, at 30 hours per week in home. I know nothing

> about how they teach a child at her age. Im not even sure why type of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

>

>

>

[Guest guest]

Welcome aboard . It must of been hard on you and

having to hear your infant cry in pain all the time. My name is Charlene

and I have 3 children. Two of them autistic. At birth they weighed over

8 pounds and never cried.

Charlene

-- Re: New to group

Hi ,

Welcome to the group. My situation sounds very similar to yours. My

daughter is almost three now, but I knew something wasn't right from

the day she was born. She screamed incessantly and was very sensitive

to sounds and lights. I would imagine that your daughter will receive

several different types of therapy, including some type of ABA (applied

behavioral analysis) and/or pivotal response training. At her age,

these won't look like much other than playing. My daughter's

therapists bring toys and just try to engage her and stimulate

language. It's not uncommon that your daughter only has two words.

Mine still only says " Mama " and that's it. Most autistic children, if

they are going to speak at all, usually don't until around 4 or 5 yeas

old. Her therapists might try sign language or PECS (using pictures to

help her show you what she needs or wants). She will probably also get

sensory integration/occupational therapy, depending on her needs. It

is a lot to digest, I know. Plus you have two other kids, and one is a

baby! I could never handle that. I only have one child and I will not

be having any more. It wouldn't be fair to or the new baby.

Please feel free to e-mail me any time. Our group is very supportive

and we're all in this together.

:-)

On Sunday, February 2, 2003, at 08:12 PM, jpatgal66

<jpatgal66@...> wrote:

> Hello everyone,

>

> My name is , I'm from Pittsburgh Pa, I have 3 children,

> who is almost 3 that is 20 months old, and Evan who is 7

> months old. We were told when was 17 months old that she has

> Autism. When we were told that she had Autism they shoved us out the

> door with no help, just a few papers of people to call. All of this

> is new to us, I have early intervention started for her, and we will

> get wrap around service, at 30 hours per week in home. I know nothing

> about how they teach a child at her age. Im not even sure why type of

> teaching they will even use on her. I'm looking to talk with other

> moms and dad, I have a VERY open mind. Im looking for advise, and

> learn as much as i can and as fast as I can. I want to do what is

> right for her, and not waste time on things that will not work for

> her. I have read about the GF/CF diet, I may try it, she has a very

> limted diet as of now. She will be going to a feeding program here in

> Pittsburgh once a week. makes a good bit of eye contact, she

> loves to play with me, only says two words, Im very worried

> about that too.

>

> When was born, 12 hours after she was born I should say she

> began to scream, and scream, about 12-14 hours per day, I took her to

> many doctors, and many trips to the ER, and I was told many things,

> at around 3 months of age, I took her to childrens hospital I was at

> my wits end, I was given zantac to give her and she shut up by the

> 2nd dose, I remember one night at one of the many ER trips that a

> doctor told me that " these type " of kids are VERY VERY smart and

> that they make good doctors, and that if I can wait it out things

> will be just fine, and by the way I like the way you got your hair

> cut since I seen you the last time. So here I sit on and Autism group

> list. Im sorry I've gone on and on. Im just lost.I look forward to

> talking and learning from others,

>

> , Pittsburgh Pa

>

>

<image.tiff>

>

>

>

[Guest guest]

Welcome to the group Peggy, nice to have you here.My name is Pennie, I am

from michigan, My daughter Abby will be 6 in April and is also autistic. She

is high functioning thanks to a wonderful teacher and a wonderful staff that

works with her. She to had a problem with the vaccines.After a DPT she had a

seizure that almost killed her, wouldnt be alive without the wonderful

paramedic that worked on her. Her ear infections started after vaccines as

well. She is on her third set of tubes in her ears. they are gettin better as

she gets older. I never noticed any traits of autism till after her MMR

vaccine at 24 months. I had a bad feeling about the vaccine and I wish I

would have listened to my gut instinct to not have them. But at the time this

was all new to me. Now I know and I warn everybody about the damagers of

vaccines. I just want people to do research before they give their kids these

vaccines. I wish I had someone tell me the dangers. Where did you say you

were from? Hope to hear from you soon.

Pennie

[Guest guest]

Hi Peggy,

I'm pretty new here myself but welcome to the group.

There's got to be a special place in heaven for Grandmothers like

you, being so involved in your grandaughter's care and all.

I think you've discovered one of the genetic links to autism: family

history of vaccine reaction which would seem to indicate a problem

with the immune system. My husband's niece had a reaction to the DPT

as did my sister. Even my Mother had a reaction to the diptheria shot

back when she was a child. My son screamed for days after the

chicken pox vaccine. I personally find it odd that I still don't show

an antibody titer to chicken pox even though I've been closely

exposed on several occasions.

I spent part of yesterday trying to convince a new allergist-

immunologist in our area to see our son and draw immune panels and

viral titers. I've learned to call and " interview " the doctor before

I go to the trouble of visiting their office. She was really

reluctant as " she wasn't trained to treat autism " . I don't get it --

if a child has a GI problem a gastro doc should be able to treat it,

if they have a problem with their immune system, shouldn't an

immunologist be able to treat it? I just really don't have the time

or energy to go to medical school myself even though I know Dr

Cave went at 36 in order to find out what caused her son's

ADD.

I really liked your trick with the vaccine consent--I'll have to try

that next time. I've heard too many stories of " LATE " regression into

autism with boosters (at adolescence even) to ever want my kids to

get any more shots.

There are a lot of biological treatments out there that may or may

not improve your grandaughter's health. I would think it would be

worth a shot. You can learn a lot from many autism and

doing searches on the computer. I also recommend this book,

especially since your grandaughter's health seems to have been

affected: Children with Starving Brains: A Medical Treatment Guide

for Autism Spectrum Disorder by Jaquelyn McCandless, MD.

Vicki

> HI everyone,

>

> Just joined this group a few days ago. I'm a 51 year old grand

mother

> living in Rockport MA. I have been raising my grand daughter who is

> now 7.5 years old, She was Dx with Aspergers at 5 years. I have had

> custody of her since she was 2.5 yrs. I have been following and

> researching Autism for about five years. My search began when I

> received my gand daughter's medical records from Wisconsin where

she

> was born and lived with her parents. I had a very sick toddler on

my

> hands and I wanted to know why. I almost dropped dead when I found

> out how many vaccines she was given. It was clear to me that she

was

> having reactions from the very first series. UTI's, constant ear

> infections from two mos until she was four. Aislinn went into

> convulsions 10 days after her fourth DPT and chicken Pox vax. You

> might not be surprised to know that Aislinns Dad (my son) stopped

> breathing after his first DPT vaccine and that was only after he

> screamed unconsolably for five hours. I rushed him to the hospital.

I

> was only 18 years old but I knew it was the vaccine, The emergency

> room Dr's denied it. They told me he was a near miss SID's, I was

> very young and didn't know what to believe. Young or not when I

> brough him back for his four month check I freaked when the

> Pediatrician wanted to give him another one. I have never been one

to

> intimidate easily so I refused. In spite of just one shot my son

> started getting ear infections. Every time I brought him to the Doc

> he would give me a hassle about the vaccines. I held out though and

> wouldn't let him vaccinate him. After that I would just bring him

to

> the emergency room when he got sick. When my second son was born I

> never brought him in for the well child visits because I didn't

want

> to give him the vaccines. Keep in mind that in the seventies the

only

> vaccines they got were DPT, polio, and MMR. I always knew that

there

> was something not quite right with Aislinns Dad. He had a really

hard

> time in school. He was Dx with ADD at twenty seven years old. I

> firmly believe that if I had let him have another DPT he would have

> died. So you see, not much has changed in 30 years. I found out

from

> my older sister that I had seizures after the small pox vaccine. My

> mother never would allow them to do it again. She refused the polio

> vaccine for me when it came out. I got a flu shot when I was 32

yrs.

> old and came down with a mild form of Guillian Barre'. I'd say we

> definately have a history of vaccine reactions. Aislinn is the

third

> Generation. Even with this history Aislinn's pediatrician wanted to

> continue vaccines. He tried to intimidate me by threatening me with

> the Department of Social Services. After working for doctors for

> about 20 years and knowing that most of them think they are GOD, I

> told him to call anyone he wanted to unless he was willing to put

his

> signature on the consent form. Of course he wouldn't so I told him

if

> he wasn't willing to take responsibility for a medical procedure he

> was trying to inforce I didn't feel confident in him as a doctor. I

> demanded her medical records on the spot. The receiptionist at the

> front desk tried to tell me it would take a few days to copy them.

I

> told her that the records she had were mine because I gave them to

> her and I purposely got very loud in the waiting room full of

> patients. I was given my records on the spot and walked out. I

never

> got contacted by DDS so the big Doc must have changed his mind. She

> see's a homeopath now. I forgot to mention that my youngest son was

> never vaccinated until he went into the Marines. He developed

severe

> asthma a month after the vaccines they gave him in the service. I'd

> say that confirms the theory. I look forward to sharing and

learning

> with all of you.

>

> Peggy

[Guest guest]

Hi Peggy.

Just a quickie to let you know that Dr. McCandless is speaking at a

conference in Fall River on March 28. Let me know if you're interested

and I will send you all the info. I'm from Nashua, NH so I always get

excited when I see a post from MA on any of my lists! Welcome aboard.

Rhonda

Mom to Olivia, 27 months PDD

[Guest guest]

Hi Peggy

Welcome to the list. My name is Tracey and my 10 year old daughter

Skylar was diagnosed autistic at the age of 3. You are a very special

grandmother to be raising your granddaughter. This is a great list full

of support, advice and just friendly ears to vent to when you are having

a rough day. I am sure you will be glad you joined.

Tracey

" hamtorohamham " wrote:

> HI everyone,

>

> Just joined this group a few days ago. I'm a 51 year old grand mother

> living in Rockport MA. I have been raising my grand daughter who is

> now 7.5 years old, She was Dx with Aspergers at 5 years. I have had

> custody of her since she was 2.5 yrs. I have been following and

> researching Autism for about five years. My search began when I

> received my gand daughter's medical records from Wisconsin where she

> was born and lived with her parents. I had a very sick toddler on my

> hands and I wanted to know why. I almost dropped dead when I found

> out how many vaccines she was given. It was clear to me that she was

> having reactions from the very first series. UTI's, constant ear

> infections from two mos until she was four. Aislinn went into

> convulsions 10 days after her fourth DPT and chicken Pox vax. You

> might not be surprised to know that Aislinns Dad (my son) stopped

> breathing after his first DPT vaccine and that was only after he

> screamed unconsolably for five hours. I rushed him to the hospital. I

> was only 18 years old but I knew it was the vaccine, The emergency

> room Dr's denied it. They told me he was a near miss SID's, I was

> very young and didn't know what to believe. Young or not when I

> brough him back for his four month check I freaked when the

> Pediatrician wanted to give him another one. I have never been one to

> intimidate easily so I refused. In spite of just one shot my son

> started getting ear infections. Every time I brought him to the Doc

> he would give me a hassle about the vaccines. I held out though and

> wouldn't let him vaccinate him. After that I would just bring him to

> the emergency room when he got sick. When my second son was born I

> never brought him in for the well child visits because I didn't want

> to give him the vaccines. Keep in mind that in the seventies the only

> vaccines they got were DPT, polio, and MMR. I always knew that there

> was something not quite right with Aislinns Dad. He had a really hard

> time in school. He was Dx with ADD at twenty seven years old. I

> firmly believe that if I had let him have another DPT he would have

> died. So you see, not much has changed in 30 years. I found out from

> my older sister that I had seizures after the small pox vaccine. My

> mother never would allow them to do it again. She refused the polio

> vaccine for me when it came out. I got a flu shot when I was 32 yrs.

> old and came down with a mild form of Guillian Barre'. I'd say we

> definately have a history of vaccine reactions. Aislinn is the third

> Generation. Even with this history Aislinn's pediatrician wanted to

> continue vaccines. He tried to intimidate me by threatening me with

> the Department of Social Services. After working for doctors for

> about 20 years and knowing that most of them think they are GOD, I

> told him to call anyone he wanted to unless he was willing to put his

> signature on the consent form. Of course he wouldn't so I told him if

> he wasn't willing to take responsibility for a medical procedure he

> was trying to inforce I didn't feel confident in him as a doctor. I

> demanded her medical records on the spot. The receiptionist at the

> front desk tried to tell me it would take a few days to copy them. I

> told her that the records she had were mine because I gave them to

> her and I purposely got very loud in the waiting room full of

> patients. I was given my records on the spot and walked out. I never

> got contacted by DDS so the big Doc must have changed his mind. She

> see's a homeopath now. I forgot to mention that my youngest son was

> never vaccinated until he went into the Marines. He developed severe

> asthma a month after the vaccines they gave him in the service. I'd

> say that confirms the theory. I look forward to sharing and learning

> with all of you.

>

> Peggy

>

>

>

[Guest guest]

Welcome! Welcome!

My daughter ie never had a chance to react to all the shots,

they had me pre-med her with Tylenol, but after the second round of

DPT, MMR, and Polio I knew something was wrong. ie developed

normally until then, had met all her developmental milestones.

I am ,ie (my nine year old Autistic daughter)and I live in

West Virginia. I am a single Mom after six years of marriage to her

dad, who was in denial at first and then blame mode on me which

esculated to abuse toward ie (emotional and physical), I left

with ie, three dogs and whatever I could fit into four

(friends) pick-up trucks.

ie was " officially " diagnosed in 1997 and from there she had

sensory integration therapy and speech. Started pre-school in 1997

after school district did eval., she got speech and OT from pre-

school, it continues and ie is blossoming. I also work with her

at home on 17 different tasks that I track everyday for the Waiver

Program she also has through the state.

I have formed a Parents Support Group in Hampshire County where we

live and our first Meeting is Feb 20th.

We share, learn, vent and grow here!

Again Welcome!

, ie's Mom

[Guest guest]

Welcome to our Still's Family Lynn,

I am sorry to hear of all your pain and agony with your illness. You may have noticed while lurking around, that your story sounds familiar, you just change the first name...Having this disease is really challenging, it too took me months to get a diagnosis and most likely I have had it longer, but it went undiagnosed and written off as a viral syndrome, I had that diagnosis for a while too.

I have not had that much reddness in my joints either and mild swelling, but they sure do hurt most of the time.

Fevers....oh joy...sweats and fevers...arghhhhh, most of us have been there and I have been told by others, who have had this alot longer then me, that they go away after time...months? years? everyone is different. I still have my fevers everyday, like clock work. What about any strange rashes? I have that too with fevers..then I sweat a little (used to alot more in the early months) then the pain in the joints get worse, by morning I am fever free for about 2 hours, but I am also very stiff and achey and that just gets worse as the day goes on, except somedays I do feel good enough to get out and about, like today, yippie !

Hang in there, we are here to help support you in anyway we can. Feel free to ask questions, vent, laugh and cry , whatever.

Lorie In Seattle

[Guest guest]

Hello Lynn and welcome just sounds whole bunch like my story i was same way.Yes the fevers or so in my case did get high very high they also usally spiked at same or approximate time each day.Unlike you tho i did have high sed rate was told it was 150 been told thats high i dont really know lol.About movin back home i had to and am lucky to have been able to,i did try it on my own but the bills evenually caught up they tend to do that with limited income lol.I sure hope u can find a doctor that can help to put a name to your illness,all of my bloodwork was normal for bout first 2 months of onset yours has been normal for a year and half or has it not been tested recently?If you havent had recent blood test id get another.The bloodwork really didnt start goin wacky in my case till i was hospialized with the other symtoms pericardis(SP)pleracy(sp).Hope i helped u a little im so new to this disease myself take care. d.Canada

New to group

Hello,

My name is Lynn and I am a 38 year old female who also suffers from Hydrocephalus.

I have been lurking here for the past few weeks ever since the doctor I recently saw mentioned Still's. I still do not have a confirmed diagnosis after a year and a half and I am just about at the end of my rope. I have been to every specialist and had every test. I got a copy of my records yesterday and found out that the one rheumatologist that saw me for 10 minutes last summer referred to me as a very anxious patient with no possible disease. I am so mad I could spit nails!! All of my blood work has been negative except last week my C-reactive protein came back positive.(Sed, ana etc all normal) I started a year and a half ago with fl -like symptoms every other week.I have read some of the stories on the site and have never had my fever go really high, does that happen to everyone?

I am in the process of applying for disability and lost my job a few months ago. I am pretty much financially devastated and may have to move home with my mother. I am feeling very helpless and without hope at this point. I just finished 3 days of prednisone and started methotrexate. It has greatly helped with my morning stiffness and fever. I could really use some encouragement. I am not feeling very positive about my outlook at this point. Also, how many out there are on disability?

Thank you

Sorry if this was too long

Lynn Renae Dudenhoefer

-On any path that you may stroll,

-keep your angel in your soul!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thanks ,

I recently had bloodwork that showed an elevated C-Reactive Protein. My sodium and Chloride were also high, which is common with dehydration which I am always fighting with the drenching sweating!

I really appreciate your response and welcome!

Lynn Renae Dudenhoefer

lynndude@...

-On any path that you may stroll,

-keep your angel in your soul!

-- Re: New to group

Hello Lynn and welcome just sounds whole bunch like my story i was same way.Yes the fevers or so in my case did get high very high they also usally spiked at same or approximate time each day.Unlike you tho i did have high sed rate was told it was 150 been told thats high i dont really know lol.About movin back home i had to and am lucky to have been able to,i did try it on my own but the bills evenually caught up they tend to do that with limited income lol.I sure hope u can find a doctor that can help to put a name to your illness,all of my bloodwork was normal for bout first 2 months of onset yours has been normal for a year and half or has it not been tested recently?If you havent had recent blood test id get another.The bloodwork really didnt start goin wacky in my case till i was hospialized with the other symtoms pericardis(SP)pleracy(sp).Hope i helped u a little im so new to this disease myself take care. d.Canada

New to group

Hello,

My name is Lynn and I am a 38 year old female who also suffers from Hydrocephalus.

I have been lurking here for the past few weeks ever since the doctor I recently saw mentioned Still's. I still do not have a confirmed diagnosis after a year and a half and I am just about at the end of my rope. I have been to every specialist and had every test. I got a copy of my records yesterday and found out that the one rheumatologist that saw me for 10 minutes last summer referred to me as a very anxious patient with no possible disease. I am so mad I could spit nails!! All of my blood work has been negative except last week my C-reactive protein came back positive.(Sed, ana etc all normal) I started a year and a half ago with fl -like symptoms every other week.I have read some of the stories on the site and have never had my fever go really high, does that happen to everyone?

I am in the process of applying for disability and lost my job a few months ago. I am pretty much financially devastated and may have to move home with my mother. I am feeling very helpless and without hope at this point. I just finished 3 days of prednisone and started methotrexate. It has greatly helped with my morning stiffness and fever. I could really use some encouragement. I am not feeling very positive about my outlook at this point. Also, how many out there are on disability?

Thank you

Sorry if this was too long

Lynn Renae Dudenhoefer

-On any path that you may stroll,

-keep your angel in your soul!

[Guest guest]

Welcome Lynn

My name is Judy and I am from PA. It sounds like you and I have alot

of the same sympthoms. I never had the high spikes just low grade

fevers. Joints progessivley getting worse never any swelling. Please

don't give up. I found a Remy that has been understanding and now I

take Remicage, Pred. and MTX. Hang in there. If you wish to contact

me at my email feel free. moyer@... Best of luck!!!

Judy, PA

>

> Hello,

> My name is Lynn and I am a 38 year old female who also suffers from

> Hydrocephalus.

> I have been lurking here for the past few weeks ever since the

doctor I

> recently saw mentioned Still's. I have run a low grade fever

since then that only gets as

> high as 101. I have sweating attacks that last for hours on end. I

change

> my clothes all day long and blow dry my hair constantly. My joints

have

> gotten progressively worse with all joints involved at this point.

No

> redness or swelling in the joints yet which only makes it harder

for me to

> convince the doctors that I hurt as bad as I do. I

> just finished 3 days of prednisone and started methotrexate. >

Lynn Renae Dudenhoefer

> -On any path that you may stroll,

> -keep your angel in your soul!

[Guest guest]

Hi Lynn,

Welcome to this support group! My name is Tricia and I live

in Wisconsin. Tom Kufahl founder of this fantastic support

group lives about 2 hours North of me, and lives in

Stoughten Wisconsin. Then over in Michigan we have

Elly and Carmen (part of the year) in Minnesota there

are some Stilligan's also. I know a is one.

Hoping you are finding some answers to your questions

here. Just ask, someone will answer.

Hopefully the Methotrexate will help you feel better.

Yes, do file for disability. Just remember that if you get

denied disability ..appeal. If you need to go the whole

nine yards..go for it. It might be a good idea to contact

a lawyer. There are some in the group who were approved

the first time around.

Again, welcome to this support group!

~~tricia~~

Wisconsin

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

Subject: New to group

Hello,

My name is Lynn and I am a 38 year old female who also suffers from Hydrocephalus.

I have been lurking here for the past few weeks ever since the doctor I recently saw mentioned Still's. I still do not have a confirmed diagnosis after a year and a half and I am just about at the end of my rope. I have been to every specialist and had every test. I got a copy of my records yesterday and found out that the one rheumatologist that saw me for 10 minutes last summer referred to me as a very anxious patient with no possible disease. I am so mad I could spit nails!! All of my blood work has been negative except last week my C-reactive protein came back positive.(Sed, ana etc all normal) I started a year and a half ago with fl -like symptoms every other week. I have run a low grade fever since then that only gets as high as 101. I have sweating attacks that last for hours on end. I change my clothes all day long and blow dry my hair constantly. My joints have gotten progressively worse with all joints involved at this point. No redness or swelling in the joints yet which only makes it harder for me to convince the doctors that I hurt as bad as I do. I also have a really positive attitude most of the time so they don't always take me seriously. My physical therapist says I have profound weakness and small amounts of activity cause me to have severe pain the next day or spend days in bed.

I have read some of the stories on the site and have never had my fever go really high, does that happen to everyone?

I am in the process of applying for disability and lost my job a few months ago. I am pretty much financially devastated and may have to move home with my mother. I am feeling very helpless and without hope at this point. I just finished 3 days of prednisone and started methotrexate. It has greatly helped with my morning stiffness and fever. I could really use some encouragement. I am not feeling very positive about my outlook at this point. Also, how many out there are on disability?

Thank you

Sorry if this was too long

Lynn Renae Dudenhoefer

-On any path that you may stroll,

-keep your angel in your soul!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Lynn,

Welcome to this support group! My name is Tricia and I live

in Wisconsin. Tom Kufahl founder of this fantastic support

group lives about 2 hours North of me, and lives in

Stoughten Wisconsin. Then over in Michigan we have

Elly and Carmen (part of the year) in Minnesota there

are some Stilligan's also. I know a is one.

Hoping you are finding some answers to your questions

here. Just ask, someone will answer.

Hopefully the Methotrexate will help you feel better.

Yes, do file for disability. Just remember that if you get

denied disability ..appeal. If you need to go the whole

nine yards..go for it. It might be a good idea to contact

a lawyer. There are some in the group who were approved

the first time around.

Again, welcome to this support group!

~~tricia~~

Wisconsin

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

Subject: New to group

Hello,

My name is Lynn and I am a 38 year old female who also suffers from Hydrocephalus.

I have been lurking here for the past few weeks ever since the doctor I recently saw mentioned Still's. I still do not have a confirmed diagnosis after a year and a half and I am just about at the end of my rope. I have been to every specialist and had every test. I got a copy of my records yesterday and found out that the one rheumatologist that saw me for 10 minutes last summer referred to me as a very anxious patient with no possible disease. I am so mad I could spit nails!! All of my blood work has been negative except last week my C-reactive protein came back positive.(Sed, ana etc all normal) I started a year and a half ago with fl -like symptoms every other week. I have run a low grade fever since then that only gets as high as 101. I have sweating attacks that last for hours on end. I change my clothes all day long and blow dry my hair constantly. My joints have gotten progressively worse with all joints involved at this point. No redness or swelling in the joints yet which only makes it harder for me to convince the doctors that I hurt as bad as I do. I also have a really positive attitude most of the time so they don't always take me seriously. My physical therapist says I have profound weakness and small amounts of activity cause me to have severe pain the next day or spend days in bed.

I have read some of the stories on the site and have never had my fever go really high, does that happen to everyone?

I am in the process of applying for disability and lost my job a few months ago. I am pretty much financially devastated and may have to move home with my mother. I am feeling very helpless and without hope at this point. I just finished 3 days of prednisone and started methotrexate. It has greatly helped with my morning stiffness and fever. I could really use some encouragement. I am not feeling very positive about my outlook at this point. Also, how many out there are on disability?

Thank you

Sorry if this was too long

Lynn Renae Dudenhoefer

-On any path that you may stroll,

-keep your angel in your soul!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thanks Tricia,

I am in Chippewa Falls, WI right now with my mom and just got home from her Vet

clinic as one of my cats started throwing up blood last night. I will write

back more later when I get back home.

----- New to group

>

>

>Hello,

>My name is Lynn and I am a 38 year old female who also suffers from

>Hydrocephalus.

>I have been lurking here for the past few weeks ever since the doctor I

>recently saw mentioned Still's. I still do not have a confirmed diagnosis

>after a year and a half and I am just about at the end of my rope. I have

>been to every specialist and had every test. I got a copy of my records

>yesterday and found out that the one rheumatologist that saw me for 10

>minutes last summer referred to me as a very anxious patient with no

>possible disease. I am so mad I could spit nails!! All of my blood work has

>been negative except last week my C-reactive protein came back positive.(Sed

> ana etc all normal) I started a year and a half ago with fl -like symptoms

>every other week. I have run a low grade fever since then that only gets as

>high as 101. I have sweating attacks that last for hours on end. I change

>my clothes all day long and blow dry my hair constantly. My joints have

>gotten progressively worse with all joints involved at this point. No

>redness or swelling in the joints yet which only makes it harder for me to

>convince the doctors that I hurt as bad as I do. I also have a really

>positive attitude most of the time so they don't always take me seriously.

>My physical therapist says I have profound weakness and small amounts of

>activity cause me to have severe pain the next day or spend days in bed.

>I have read some of the stories on the site and have never had my fever go

>really high, does that happen to everyone?

>I am in the process of applying for disability and lost my job a few months

>ago. I am pretty much financially devastated and may have to move home with

>my mother. I am feeling very helpless and without hope at this point. I

>just finished 3 days of prednisone and started methotrexate. It has greatly

>helped with my morning stiffness and fever. I could really use some

>encouragement. I am not feeling very positive about my outlook at this

>point. Also, how many out there are on disability?

>Thank you

> Sorry if this was too long

>Lynn Renae Dudenhoefer

>-On any path that you may stroll,

>-keep your angel in your soul!

>

>

>

--

Lynn

--