New member

Report post · December 13, 2001

taeboy0rky wrote:

To make the fat cat marketing people even richer

Jill

who hates that so often they just change the dollar sign to a pound

sign on goods sold both in the US & UK.... talk about rip-off....

Yes, that's true. I know people have to make a living, but then they often

price things so they're out of the reach of some.

Sandie, Tae and Bo )!!!!!

" Believe. Believe in yourself. Believe in the one who believes in you. All

things are possible to she who believes. Blessings on your courage. "

--from " Hold That Thought " by Ban Breathnach

" I was always looking outside myself for strength and confidence, but it comes

from within. It is there all the time. "

--------- Freud

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

Report post · May 1, 2003

Hello,

My name is Corina and I am the parent of a 5 year old autistic child. My

husband and I had always heard that the best therapy for our daughter would be a

sibling. We finally added one to our family and she is 2 months old. So,

someone please tell me, does it get easier????? I just can't imagine how

another sibling is the best therapy. Right now we are seeing our older child

regress and her behavior has become a bit more aggressive since the birth of her

sister. She finally acknowledges the baby is a part of the familly by referring

to her as " baby sister. " My daughter does not communicate well but she does get

her point across in her own way. The only good thing I have seen is that she

gets so mad with the baby that she screams out her demands and is able to do so

in a more articulate manner. We are actually hearing 5 and 6 word sentences! I

just want to know what we can do to help our daughter adjust. For those of you

who had another child after your autistic child was born, what suggestions do

you have? The therapist just says for us to be patient but he does not have to

live in our household and after 2 months of this, it is easier said than done.

For the past 2 days for example, my duaghter has undressed herself and thrown

major fits after I had already gotten her ready for school. I usually get her

ready and leave for work. My husband drops her off at school. It takes both of

us to get her dressed now when we had progressed to the point where she actually

helped one of us get her ready. This behavior has only occurred in the past 2

months since the birth of the baby.

family

Report post · May 17, 2003

The best thing I ever bought was a flowbee. It hooks to your vacuum and

cuts their hair.

Vicki

New Member

Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

year old has been diagnosed with Asperger's and my 3 year old has

PDD. They were both diagnosed within the last 6 months, so I am

somewhat new to this. I am in the process of learning all I can

about the subject and treatment options. I would appreciate any

information which might be helpful. I do have a specific question:

Does anyone have any advice on how to take my child to get a haircut

without him freaking out? Thanks.

Unlocking Autism

www.UnlockingAutism.org

Autism-Awareness-Action

Worldwide internet group for parents who have a

child with AUTISM.

Schafer Autism Report

News and information on Autism

To Subscribe http://home.sprynet.com/~schafer/index.html

Healing Autism: No Finer Cause on the Planet

Report post · May 17, 2003

Where do you live? There are some hairstylists that will come to your home

and some that work out of their homes. That seems to work better. If you

live in Austin, I can help you with specific people.

Also, I would seriously recommend you consider looking into having a home

ABA program for your kids. They are young and at the perfect age to benefit

from it.

New Member

> Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> year old has been diagnosed with Asperger's and my 3 year old has

> PDD. They were both diagnosed within the last 6 months, so I am

> somewhat new to this. I am in the process of learning all I can

> about the subject and treatment options. I would appreciate any

> information which might be helpful. I do have a specific question:

> Does anyone have any advice on how to take my child to get a haircut

> without him freaking out? Thanks.

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe http://home.sprynet.com/~schafer/index.html

> Healing Autism: No Finer Cause on the Planet

>

Report post · May 18, 2003

We live in Houston, and my older son's hairdresser agreed to cut my ASD

son's hair. We take the TV/VCR with us and his favorite video, and she

takes her time with him, but we do pay her double her fee.

New Member

> Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> year old has been diagnosed with Asperger's and my 3 year old has

> PDD. They were both diagnosed within the last 6 months, so I am

> somewhat new to this. I am in the process of learning all I can

> about the subject and treatment options. I would appreciate any

> information which might be helpful. I do have a specific question:

> Does anyone have any advice on how to take my child to get a haircut

> without him freaking out? Thanks.

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe http://home.sprynet.com/~schafer/index.html

> Healing Autism: No Finer Cause on the Planet

>

Report post · May 18, 2003

If you are in Dallas, there is a great stylist who is wonderful with

children with autism. She has her own shop, Tots to Teens, in Plano and her

name is Robin. Her shop has tv's with lots of kids movies, toys, special

chairs, the works. She is very patient and very fast.

Anissa

New Member

>

> > Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

> > year old has been diagnosed with Asperger's and my 3 year old has

> > PDD. They were both diagnosed within the last 6 months, so I am

> > somewhat new to this. I am in the process of learning all I can

> > about the subject and treatment options. I would appreciate any

> > information which might be helpful. I do have a specific question:

> > Does anyone have any advice on how to take my child to get a haircut

> > without him freaking out? Thanks.

> >

> > Unlocking Autism

> > www.UnlockingAutism.org

> >

> > Autism-Awareness-Action

> > Worldwide internet group for parents who have a

> > child with AUTISM.

> >

> > Schafer Autism Report

> > News and information on Autism

> > To Subscribe http://home.sprynet.com/~schafer/index.html

> > Healing Autism: No Finer Cause on the Planet

> >

Report post · May 19, 2003

That wasn't a big problem for us, so I don't know from our own experience

with this specific question. But we have had similar type problems, so here

is one suggestion you might try....go to a salon specializing in kids, the

ones that have TV's , bring your child's favorite video and allow them to

watch the video WHILE & ONLY- their hair is being cut.

This has worked for us in other similar types of problems.

J. P. Reirdon

Webmaster

http://www.featnt.org/ <http://www.featnt.org/>

<http://www.autismtreatment.info/> http://www.autismtreatment.info/

You CAN treat Autism!! Get treatment tips for children with Autism, PDD and

Aperger's Syndrome from parents who have successfully helped their children.

New Member

Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

year old has been diagnosed with Asperger's and my 3 year old has

PDD. They were both diagnosed within the last 6 months, so I am

somewhat new to this. I am in the process of learning all I can

about the subject and treatment options. I would appreciate any

information which might be helpful. I do have a specific question:

Does anyone have any advice on how to take my child to get a haircut

without him freaking out? Thanks.

Report post · August 8, 2003

Welcome Jeffery,

Sorry to hear you got AOSD but just think how great it is after

having all those tests for all those horrible things to come up with

no results and just have Stills. Good old aches and pains and

rashes and thangs.

Welcome to Stilligans Island as we refer to it. This is a strange

place inhabited by strange folks. Not really, you will find this

is the best dang place you ever seen, and the folks here are very

helpful and friendly.

There are a few of us here that are old geezers. I am somewhere

around 55.

Dan

Montana

Report post · August 8, 2003

Hi

Welcome to the group!

Lots of support here. All the best

Heidi

Ontario

Canada

new member

My name is Hofstein and I, too suffer from AOSD.I was diagnosed with

it last July and I have loads of curious questions about this rare disease.

My birthday is February 11 and I'm 50 years old.

My brief story was that one day last March...2002, I woke up one morning and

couldn't walk. It felt like my ankles were going to crack when I attempted to

get out of bed. I also had this rash all over my neck, chest, back, and legs.

I was frightened and knew something was wrong. Up until that morning I was

relatively normal. I do have allergies and a mild case of asthma. As days went

by

my condition was worsening. I had trouble swallowing and I was always cold.

When I went to my Dr., he sent me for blood work and it was determined that

my whites were very high and my reds were very low.

My GP Dr. then referred me to a hemothologist/oncologist for further testing.

As the weeks/months went by, I was tested for every possible disease and

everthing came up normal. I begged for medication because I was in constant

pain

in all of my joints. I was losing weight rapidly with no appetite whatsoever.

And I am one that loves to eat. Finally after 4 months of testing, the

Hemothologist dismissed me claiming hat his work found nothing wrong. But I

knew there

was something Very wrong. I went back to my GP and he was thinking of sending

me to a Rheumotologist.

A friend of m family upon hearing of my symptoms referred me to her

Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went

to

see him, he looked at my chart and knew exactly what was wrong. He described

the symptoms and knew by readings of my white and red blood counts. He

immediately prescribed prednisone and methotrexate and I immediately felt

better.

It's been a little over a year since I've been diadnosed with AOSD,

and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a

lot

of good days, but I also have some bad ones. When I have a bad day,

everything hurts. From neck to toes, my joints are swollen and painful. Dr.

Storch is

going to be taking me off Embrel because it's not strong enough and putting me

on Remicade(?). I will start this medication when he's back from vacation.

That's my story and I'm thrilled that there's a support group because nobody

can

relate to what I go through sometimes.

Report post · August 8, 2003

Hi ,

Welcome to this support group! I think there are a few others with the

Stills Disease (or the " Dragon " as we sometimes call the disease)

who live in your area.

You will certainly learn everything you never wanted to know about this

strange disease from this group. Ask any questions you might have,

and you will usually receive an answer.

My name is Tricia and I'm from Wisconsin, I live about 2 hours South

of Tom Kufahl the man who founded this support group. I have had the

disease steady since 1979. If you would like to read my " member

history " sometime please go to www.stillsdisease.org then click on

" member histories, " then click on Tricia Looker.

Happy to meet you , and look forward to getting to know you better!

Your Stills friend from Wisconsin,

~~tricia~~

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

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

-- new member

My name is Hofstein and I, too suffer from AOSD.I was diagnosed with

it last July and I have loads of curious questions about this rare disease.

My birthday is February 11 and I'm 50 years old.

My brief story was that one day last March...2002, I woke up one morning and

couldn't walk. It felt like my ankles were going to crack when I attempted

to

get out of bed. I also had this rash all over my neck, chest, back, and legs

I was frightened and knew something was wrong. Up until that morning I was

relatively normal. I do have allergies and a mild case of asthma. As days

went by

my condition was worsening. I had trouble swallowing and I was always cold.

When I went to my Dr., he sent me for blood work and it was determined that

my whites were very high and my reds were very low.

My GP Dr. then referred me to a hemothologist/oncologist for further testing

As the weeks/months went by, I was tested for every possible disease and

everthing came up normal. I begged for medication because I was in constant

pain

in all of my joints. I was losing weight rapidly with no appetite whatsoever

And I am one that loves to eat. Finally after 4 months of testing, the

Hemothologist dismissed me claiming hat his work found nothing wrong. But I

knew there

was something Very wrong. I went back to my GP and he was thinking of

sending

me to a Rheumotologist.

A friend of m family upon hearing of my symptoms referred me to her

Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went

to

see him, he looked at my chart and knew exactly what was wrong. He described

the symptoms and knew by readings of my white and red blood counts. He

immediately prescribed prednisone and methotrexate and I immediately felt

better.

It's been a little over a year since I've been diadnosed with AOSD,

and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a

lot

of good days, but I also have some bad ones. When I have a bad day,

everything hurts. From neck to toes, my joints are swollen and painful. Dr.

Storch is

going to be taking me off Embrel because it's not strong enough and putting

me

on Remicade(?). I will start this medication when he's back from vacation.

That's my story and I'm thrilled that there's a support group because nobody

can

relate to what I go through sometimes.

Report post · August 8, 2003

Hello Jeffery welcome to the best support group for Stills well it is probally

the only 1 eh.Im Docken from Canada i went through pretty much all uve

been through bro its very rough (happy to say i consider myself one of the lucky

ones well soo far).Just like you it hit very fast was little stiff in morn then

within a few hours i could hardly walk,and just like you i was dismissed couldnt

find anything wrong.My doctor put me on antibiotics for 2 months figuring it

would help of course i got worse.I ended up in hospital with the

rash,pleuacy,pericardis,jointpains,anemia and just like you test after

test.Finally after 3 months in hospital was seen by rhumy who told me amost

immediatly i prob had Stills.Im currently on 8mgs of prednisone and 20mgs of

methotextrate.I can personally tell u it can get better im currently back workin

cement finishing and very little pains,but i was tricked once already by the

dragon soo im lovin it while it lasts.You take care and welcome home.

d.Canada

new member

My name is Hofstein and I, too suffer from AOSD.I was diagnosed with

it last July and I have loads of curious questions about this rare disease.

My birthday is February 11 and I'm 50 years old.

My brief story was that one day last March...2002, I woke up one morning and

couldn't walk. It felt like my ankles were going to crack when I attempted to

get out of bed. I also had this rash all over my neck, chest, back, and legs.

I was frightened and knew something was wrong. Up until that morning I was

relatively normal. I do have allergies and a mild case of asthma. As days went

by

my condition was worsening. I had trouble swallowing and I was always cold.

When I went to my Dr., he sent me for blood work and it was determined that

my whites were very high and my reds were very low.

My GP Dr. then referred me to a hemothologist/oncologist for further testing.

As the weeks/months went by, I was tested for every possible disease and

everthing came up normal. I begged for medication because I was in constant

pain

in all of my joints. I was losing weight rapidly with no appetite whatsoever.

And I am one that loves to eat. Finally after 4 months of testing, the

Hemothologist dismissed me claiming hat his work found nothing wrong. But I

knew there

was something Very wrong. I went back to my GP and he was thinking of sending

me to a Rheumotologist.

A friend of m family upon hearing of my symptoms referred me to her

Rheumotologist who is Dr. Marc Storch out of central New Jersey. When I went

to

see him, he looked at my chart and knew exactly what was wrong. He described

the symptoms and knew by readings of my white and red blood counts. He

immediately prescribed prednisone and methotrexate and I immediately felt

better.

It's been a little over a year since I've been diadnosed with AOSD,

and now i'm on Embrel and a low dosage of predisone(10 mg per day). I have a

lot

of good days, but I also have some bad ones. When I have a bad day,

everything hurts. From neck to toes, my joints are swollen and painful. Dr.

Storch is

going to be taking me off Embrel because it's not strong enough and putting me

on Remicade(?). I will start this medication when he's back from vacation.

That's my story and I'm thrilled that there's a support group because nobody

can

relate to what I go through sometimes.

Report post · August 9, 2003

Hi Dennis.. First off welcome home.. You have found a wonderful support group

here.. Feel free to vent, ask anything or just chime in.. lol.. I am

currently on 25mgs a week of Methotrexate (MTX) by injection, 1mg Folic Acid

daily,

10mgs daily Prednisone, 75 mgs twice a day Voltaren and Vicoden for the pain..

Since I have started the MTX by injection I have been able to work more and

have started to feel better.. Mind you I still get tired. But the pain in my

hip, knees and legs are no where near the pain it was. I don't have any

children, but I am able to spend more time now with my family, friends and do

things

with my neice's and nephews. Little by little I have been able to do more.

You just learn to deal and accept your new limitations that the " dragon " has

bestowed on you.. lol.. We are all here for you and welcome you home with open

arms.. I am truly sorry that you have this disease, but you are in a wonderful

place here.. I was diagnosed in October 2002 after being sick for 2 1/2 yrs..

I am grateful for the help and input of the group.. Look forward to hearing

more about you and from you..

Kelley in Colorado

Kelleyak31@...

Report post · August 9, 2003

Hello Dennis sorry to hear u hav Stills,or the dragon as is are little

nickname.I surely kno wht u mean about playin with ur kids even tho i dont hav

any.Its the little things in life that u miss when ur in the kind of pain that

Stills causes.I was diagnosed bout a year ago and went though a really tuff 7

months,as of now i feel fairly normal again soo it can get better bro.I also

realize the dragon can strike back hard and is unpredictable soo my fingers are

crossed.Im currently on 8mgs of prednisone and 20mgs of methotextrate and that

combo really seems to be workin for me but as others will tell you the were all

react soo differently to the different meds for Stills.myself too i feel

stiffness in morn still but not even close to what it was before i would wake up

cramped up real bad too.Take care and welcome hope u get to play with ur little

ones soon. d.Canada

New Member

Hello everyone. My name is Dennis Brock and I was recentley

diagnosed with stills disease. I have had severe joint pain and

mild fevers usually around 99-100. Restlesness and sleepness and a

rash on my legs around the thigh area. I have tested negative for

the RF Factor..The last time my C reactive Protein was checked it was

9.72 which is supposed to be .2 to .8 from what my RD said.I have

had severe hip pain. Pain in my ankles knees and shoulders to the

point I cannot hardly get out of bed some mornings. The morning

stiffness usually last around 45 min sometimes longer and sometimes

sooner. I take Plaqenuil 200mg bid, darvacet n100 tid, prednisone

20 mg bid, ativan 1mg qd and feldene 20mg qd. It has made me a bear

sometimes and I can say it has affected my life and my job. It is

difficult sometimes. I guess the biggest thing for me and I cant

play with my kids some days because of the pain and work somedays is

somewhat unbearable. I take my pain medicine but sometimes it does

not touch the pain.. I want to ask my RD for something stronger but

dont want to be messed up all the time. I am going to ask about

humira to see if that is something that would be benificial for me.

I also had a bone scan which shows I have norrowing or deteoration

of the shoulders. I have made up my mind that I will not let this

thing get the best of me. Anyone have any comments on coping

espically when it hurts you mentally and physically sometimes to

play with your kids.

Thanks All,

Dennis

Report post · August 10, 2003

Hi Dennis,

My name is Dave. I have severe adult onset stills dz. I'm 21 years old and I

live in South fla, I want to welcome you to our wonderful support organization

group. We are here for you day and night 24/7 When ever you need to vent

where here for you!!! If you need any information or questions or anything else

or just would like to chat just E-mail anytime My e-mail address is

wave678@.... Again welcome to the stilligans family.

Sincerely --------Dave

wave678@...

hope you feel better soon and be PAIN FREE!!!!!!!!!!

take care dennnis.

bye for now

Report post · August 10, 2003

Hi Dennis,

I'm Caroline (2) and am newly diagnosed with Stills as well. I have

three children, aged 9, 7 and 4 and understand exactly what you mean

about being a bear and not being able to play with them when you feel

rough. I struggle with that fact that for the past year my children

have had to get used to me being irritable, tired and unable to do

little more than 'survive' as I have lurched from one crisis to

another. I have spent many days in hospital, under gone countless

tests, and had major abdominal surgery. It is very hard when you wince

every time they come up to cuddle you. It's very difficult to hide the

fact that it hurts or you feel awful. My husband is a fantastic support

and does endless things with the children, but that is difficult too as

I feel like he gives them all the fun in life and I'm the tired, grumpy

one. But those are just the bad days, and I'm amazed how the children

adapt. I do hate the fact that they know I can't join in the rough and

tumble stuff, but that's life at the moment and there's not much I can

do to change it. The new medication I'm on - Prednisolone - is

gradually helping, and I have finally found a doc who seems to know

what he's talking about, which is reassuring. Sometimes I take Tramadol

for joint pain, although I only take it when desperate as it makes me

rather stoned and sleepy. Still, it works, and offers relief when I

need it.

On a more positive note, the children have become more independent and

willing and able to do more for themselves, like shower each other when

getting up the stairs is too much effort for their mum! The older two

help with the younger one and all three are incredibly caring with me

when I'm feeling bad. They never hold a grudge when I've been ratty

with them either!

We try to arrange to do things together, trips out or just go for

coffee at the local cafe. And I try not to beat myself up with guilt

that I can't be all things to all people, and that would include my

husband too, as sure as hell he didn't bargain for such a sickly wife

when he said " In sickness and in health " !!

Anyway, I hope the good days go some way to making up for the bad.

All the best.

Caroline the second.

On Saturday, August 9, 2003, at 11:11 PM, CplBrock wrote:

> Hello everyone. My name is Dennis Brock and I was recentley

> diagnosed with stills disease. I have had severe joint pain and

> mild fevers usually around 99-100. Restlesness and sleepness and a

> rash on my legs around the thigh area. I have tested negative for

> the RF Factor..The last time my C reactive Protein was checked it was

> 9.72 which is supposed to be .2 to .8 from what my RD said.I have

> had severe hip pain. Pain in my ankles knees and shoulders to the

> point I cannot hardly get out of bed some mornings. The morning

> stiffness usually last around 45 min sometimes longer and sometimes

> sooner. I take Plaqenuil 200mg bid, darvacet n100 tid, prednisone

> 20 mg bid, ativan 1mg qd and feldene 20mg qd. It has made me a bear

> sometimes and I can say it has affected my life and my job. It is

> difficult sometimes. I guess the biggest thing for me and I cant

> play with my kids some days because of the pain and work somedays is

> somewhat unbearable. I take my pain medicine but sometimes it does

> not touch the pain.. I want to ask my RD for something stronger but

> dont want to be messed up all the time. I am going to ask about

> humira to see if that is something that would be benificial for me.

> I also had a bone scan which shows I have norrowing or deteoration

> of the shoulders. I have made up my mind that I will not let this

> thing get the best of me. Anyone have any comments on coping

> espically when it hurts you mentally and physically sometimes to

> play with your kids.

>

> Thanks All,

> Dennis

>

<image.tiff>

>

Report post · August 10, 2003

Hi Dennis,

Welcome to The Still Disease Support Group! We are glad to have

you join us, but at the same time very sorry you are also fighting the

mean " dragon " Stills Disease.

My first bout with the disease was in 1971, then a short non-med remission,

hit again in 1973, another non-med remission (gave birth to a healthy baby

boy in 1975) then in 1979 the disease came back with a vengence and has

never left. I did not receive a diagnosis for 16 years! I am so happy to

learn

that most are being diagnosed quite quickly nowadays. At present I am in

a mostly remission, but still taking meds. Have had both shoulders and a

knee totally replaced due to damage from the disease...but, at least they

don't pain anymore.

I share your concern about not being able to play with the kids. Our son was

four when the disease " hit " and stayed. Even after these many years (he's

almost 28 now) when I think back, I feel like I missed so much by not being

able to run and play ball with him etc. We did watch a lot of " Sesame Street

"

and other programs like that together, and I read to him almost every single

day. He had a stack of books, and sometimes it seemed we'd never get to

bottom! It is one of his fondest memories, all of the reading we did

together.

When he entered school and learned to read...he read that same stack of

books to me....often. How old are your children Dennis? There are many

things you can do with them, the important thing for children is that you

care

enough to listen to them, and just *be* there for them. If you are in so

much

pain and still managing to go to work, (depending on their age) as I

mentioned

mainly *listen* to them...explain to them how you are feeling...ask them to

get

this or that for you..make them feel useful and important. They feel

helpless

too...they see you not feeling well, and knowing you hurt...and they hurt

too.

Children understand more than we sometimes think they do, even the very

young ones.

Well, anyway..I guess I'm " on the run with words " this afternoon! Again,

welcome to the group!

From Wisconsin,

~~tricia~~

++++++++++++++++++++++++++++++++++++++++++++++++++++

-- New Member