New Member

Report post · June 7, 2005

Thank you for your e-mail. So maybe there is a little hope??? I hope that

you are doing well. I am glad that others take the time to inform me of

treatments and how long it takes to get maximim relief. That is something that

the

Doctors I think sugarcoat sometimes.

Report post · June 7, 2005

Hello Danni nice to meet you,but sorry your not doing well.Im same age and

was diagnosed in 2002.The prednisone has not worked at all?Some here do not

respond to prednisone,it should have releived some of the pain soon after

taking.Is there any hope of maybe trying one of the biologics,they seem to

work best for most here.Im not sure about the plauquinil but yes the

Methotextrate takes like 6 weeks before any noticable difference and longer

for maximum results.I hope the fevers and pains go away soon,take care.

d.Canada New member

> To Whom It may Concern,

> I am writing to give the group some information about

> myself. My name is Danni Koche'. I am 33 years old and will turn 34 on

> 7/17/05

> ( gosh how time flies). I was recently diagnosed with still's disease

> after 2

> years of test after test and " diagnosis " of other diseases. I have been a

> Nurse since I was 17 and am working to get my degree in CSI. I have had

> alot of

> joint pain mostly in my wrists, elbows and hips along with an enlarged

> liver

> and very high fevers. Before I was diagnosed I felt like all of my pain

> was

> in my head and had a tough time dealing with it. I am getting married on

> 11/19/05 and since I was diagnosed I feel like maybe my Fiance should not

> suffer

> with me. I feel so confused about treatment options and have been started

> on

> prednisone,methotrexate and plauquinil. I am still having difficulties

> but my

> Doctor tells me that it takes a while for treatment to work. I am looking

> forword to hearing from others with this disease and hope that I can

> learn to

> deal with it . I hope to one day be able as a Nurse to help others who

> are

> suffering with this.

>

Report post · June 7, 2005

Welcome Danni ! I have had this disease for a while but have been lucky in

that recently I only get the weakness. (my joint pain is there but quite minor

thank God) I know rest and stress relief is important... oh yes it is..

Easier said than done tho. You will find plenty of friends here. Let us know how

it all goes...and congratulations on getting married!! Hugs Liz NJ

Report post · June 7, 2005

Welcome Danni;

My nickname is Melt, diagnosed since 1977. For me the first years were the

worst and it got better after. Be sure to take care of your joints and get lots

of rest when you can. Congratulations on your upcoming nuptials and I pray your

fiancee will understand your illness and give you lots of support.

We are here for you to lend friendship and support anytime.

Smiles,

----- Original Message -----

From: Blondedolphin172@...

To Whom It may Concern,

I am writing to give the group some information about

myself. My name is Danni Koche'. I am 33 years old and will turn 34 on

7/17/05

( gosh how time flies). I was recently diagnosed with still's disease after 2

years of test after test and " diagnosis " of other diseases.

Report post · June 7, 2005

Dear Danni,

Welcome to our group. I'm sorry you were diagnosed with Stills Disease, but

wish it hadn't taken so long. A bit of relief does come with giving it a name.

You will find a lot of support in our group!

My name is Barbara, 46, and I've had Stills Disease for 17 years. I used to

be a RN, but have been disabled and was unable to keep up with the continuing

education. So I let my license go, sadly.

I became sick a year after getting married. I made good money, was trim, and

very active. This illness changed me, but it didn't change the love and

devotion and I have. If your fiancee continues to give his love and

support, then marry! He might be devastated to lose your relationship.

Find out as much as you can about this disease. Get your fiancee involved.

Take care of yourself and again, welcome to our family!

Much love,

Barbara Gardner

Report post · June 8, 2005

Welcome Danni,

We are glad to have you and hope you are well soon. There are many of us here

and many that have improved and moved on.

Lynn

>

> From: Blondedolphin172@...

> Date: 2005/06/07 Tue PM 10:44:12 EDT

> To: stillsdisease

> Subject: New member

>

> To Whom It may Concern,

> I am writing to give the group some information about

> myself. My name is Danni Koche'. I am 33 years old and will turn 34 on

7/17/05

> ( gosh how time flies). I was recently diagnosed with still's disease after 2

> years of test after test and " diagnosis " of other diseases. I have been a

> Nurse since I was 17 and am working to get my degree in CSI. I have had alot

of

> joint pain mostly in my wrists, elbows and hips along with an enlarged liver

> and very high fevers. Before I was diagnosed I felt like all of my pain was

> in my head and had a tough time dealing with it. I am getting married on

> 11/19/05 and since I was diagnosed I feel like maybe my Fiance should not

suffer

> with me. I feel so confused about treatment options and have been started on

> prednisone,methotrexate and plauquinil. I am still having difficulties but my

> Doctor tells me that it takes a while for treatment to work. I am looking

> forword to hearing from others with this disease and hope that I can learn to

> deal with it . I hope to one day be able as a Nurse to help others who are

> suffering with this.

>

Report post · June 8, 2005

Hi, Danni, my name is Gail and I'm 36 and have had Still's since I was 18. Melt

is right, sometimes the beginning of treatment can be tough due to the fact that

they need to find the right treatment plan for you. It does take a while for

the meds to work, so hang in there, get plenty of rest and read up on it!

I am currently in a flare, taking Methotexate, Pred and Remicade. I have had

several periods of remmission in my life (always look forward to those!) and

every time I flare, I think scary thoughts. But, now that they finally know

what it is (I also went 8 years w/out a correct DX) the fear has lessened

because now they know what to do.

Please ask anything you need to. Information is key, as well as support. Good

luck with your upcoming marriage...

Gail

Blondedolphin172@... wrote:

To Whom It may Concern,

I am writing to give the group some information about

myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05

( gosh how time flies). I was recently diagnosed with still's disease after 2

years of test after test and " diagnosis " of other diseases.

__________________________________________________

Report post · June 9, 2005

Marie,

Welcome, so sorry your niece is suffering so. Sounds like she is on the most

typical drugs for this and I personally can't say that there are alternatives.

This is a tough disease, but i do know that many recover or go into remission

also.

Good luck to you both and feel free to ask any questions at all.

Lynn

>

> From: CailinBeag@...

> Date: 2005/06/08 Wed PM 10:04:05 EDT

> To: stillsdisease

> Subject: New Member

>

> Hi all,

> My name is Marie and I live in New York. My whole family lives in

> Ireland where my niece(12yrs old) was diagnosed Nov 2004 wth JRV and Still's

> Disease. She tested positive to a blood test after 2 yrs of misdiagnosis,

pain &

> rashes. I never heard of it before this and I can't find anyone in NY who

knows

> anything, I even have friends in medical who can't tell me anything. I am

> looking to find out how I can help her, support her or get her some answers.

>

> My niece Shona is on the following medication, I don't even know what these

> medication do or if there is any alternative to them. Maybe someone can shed

> some light.

> Daily:

> Prednesol 50mg

> losec 40mg

> voltarol 50mg

> naprosyn 250mg

> folic acid 40mg

> tegretol 5mg

> codeine 60mg

> durogesic 25mg every 72hrs- patch

> Fridays- Methrotrexate 25mg.

>

> I hope I haven't overloaded you all with too much info. I just don't know

> where to start. I watch how you support one another and I would love to be

part

> of it.

> Thank you so much,

> Marie- NY

>

Report post · June 9, 2005

Dear Marie;

We have brochures available by sending your snail mail address to Bob at

oldgoat378@... The brochures explain about Stills disease and are free

for the asking. Maybe this could help your family and or doctors understand

better.

Good day to you, Melt

----- Original Message -----

From: CailinBeag@...

My name is Marie and I live in New York. My whole family lives in

Ireland where my niece(12yrs old) was diagnosed Nov 2004 wth JRV and Still's

Disease. I even have friends in medical who can't tell me anything. I am

looking to find out how I can help her, support her or get her some answers.

Report post · June 9, 2005

hi blondedolphin, my name is lauri i have JRA, i am 31 yrs old, if youd like yo

keep in touch , it might be nice to talk to someone who knows what were going

through

Blondedolphin172@... wrote:

To Whom It may Concern,

I am writing to give the group some information about

myself. My name is Danni Koche'. I am 33 years old and will turn 34 on 7/17/05

( gosh how time flies). I was recently diagnosed with still's disease after 2

years of test after test and " diagnosis " of other diseases. I have been a

Nurse since I was 17 and am working to get my degree in CSI. I have had alot of

joint pain mostly in my wrists, elbows and hips along with an enlarged liver

and very high fevers. Before I was diagnosed I felt like all of my pain was

in my head and had a tough time dealing with it. I am getting married on

11/19/05 and since I was diagnosed I feel like maybe my Fiance should not

suffer

with me. I feel so confused about treatment options and have been started on

prednisone,methotrexate and plauquinil. I am still having difficulties but my

Doctor tells me that it takes a while for treatment to work. I am looking

forword to hearing from others with this disease and hope that I can learn to

deal with it . I hope to one day be able as a Nurse to help others who are

suffering with this.

Report post · June 10, 2005

Dear Barbara,

I wanted to let you know that my future husband read your e-mail to

me. He started to cry . Your e-mail was so close to how I feel right now. I

,like you, love being a RN but know that it can be easily taken. My future

husband says to tell you that your story has touched us both. See he feels that

no

matter how many times I go to the doctor or hospital he will never leave. I

know he loves me more than anything in this world and you have given me hope

that our love can survive. I want you to know that when I read your e-mail I

for the first time feel that this disease is a fight that I don't have to

fight alone. Thank You and please keep in touch with me. God Bless you and

your

family .

Report post · June 17, 2005

Welcome Krista!

We are so glad to have you and would love to see you in Las Vegas too.

There are quite a few Canadians in the group actually too!! So sorry you are

having a rough time but you have found the best place to be.

Lynn in Wisconsin, USA

-- New Member

Hello all,

My name is Krista Soetaert I have been on the mailing list for about a

week I

received so many emails the first day that I seem to have skipped the

email

that asked me to introduce myself. So after reading another new members

information

I decided I better go back to the beginning and see what the heck I

missed.

So here it goes.

I am 36 yrs old (just turned on June 14) not really impressed with the

fact that I am

this old. (luckily I try not to act my age) My grandmother always tells

me you are only

as old as you act (so maybe I am 25).

I live in Grande Prairie Alberta Canada, and after reading all of your

emails I am

very grateful for our Health Care system. Both my husband and myself

have employee

benefits which basically pays for all of my medications. I don't have

to pay for doctors

visits that is paid from Alberta Health Care. I was very distressed to

hear all of the

incredible stories about the cost of medicare, as most of the emails

that I have read,

it sounds like the majority of you live in the United States.

I am an Assistant to the Deputy Superintendent of Catholic Schools.

I have been married for 12 years, my husband's name is . I have two

beautiful

boys, Tanner (12) and Colton (9). I am very lucky.

I did write to Sini earlier this week because I felt comfortable

talking about JRA as

I had this when I was 6 years old. I went into remission for over 20

years. When I was

28 years old I got really sick again. Luckily my mom was there for me

and she told my

doctor's that I had JRA before which was a good thing. I had a fabulous

doctor who listened

to her. Where I live we do not have any RD so she called Edmonton

(bigger city) when I

got fluid on the heart and lungs. The doctor's there told my doctor to

air vac me to Edmonton.

Of course still no diagnosis at this time, but after the RD saw me she

asked me if I was sure

that I had JRA when I was 6 ( at this point I was a little testy so I

said well that's what they

told me and my family), she asked me this BEFORE reading my chart,

after she read my chart

she said you have SD. I thought she maybe should have read my chart

first but whatever.

Finally after a total of 1 month I was back home. I seem to be very

lucky. The predn. worked.

So at this time I take Celebrex very rarely.

Of course about 1 and a half weeks ago I was diagnosised with

Fibromyalgia ( just when you think alright I am doing Ok).

Right now I am working half days that works so far. I come home from

work and nap then go and pick

up my children. I am loving that.

Thank you all for the great information. I am trying to get the money

together to come to the

Stills conference in Las Vegas. Hope I can come.

Sorry about the length of this email apparently I am a little wordy

tonight.

Krista

Grande Prairie, AB Canada

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

Report post · June 18, 2005

Dear Krista,

Welcome to our wonderful family. You have definitely found an oasis in the

midst of the chaos!

I am Larry from North Carolina and have been diagnosed since Feb. of this year.

Keep coming back to us and let us know what you need or just vent. Don't worry

about being wordy. You say whatever you need to for however long you need.

Many Blessings!

Larry B.

Krista Soetaert wrote:

Hello all,

My name is Krista Soetaert I have been on the mailing list for about a

week I

received so many emails the first day that I seem to have skipped the

email

that asked me to introduce myself. So after reading another new members

information

I decided I better go back to the beginning and see what the heck I

missed.

So here it goes.

I am 36 yrs old (just turned on June 14) not really impressed with the

fact that I am

this old. (luckily I try not to act my age) My grandmother always tells

me you are only

as old as you act (so maybe I am 25).

I live in Grande Prairie Alberta Canada, and after reading all of your

emails I am

very grateful for our Health Care system. Both my husband and myself

have employee

benefits which basically pays for all of my medications. I don't have

to pay for doctors

visits that is paid from Alberta Health Care. I was very distressed to

hear all of the

incredible stories about the cost of medicare, as most of the emails

that I have read,

it sounds like the majority of you live in the United States.

I am an Assistant to the Deputy Superintendent of Catholic Schools.

I have been married for 12 years, my husband's name is . I have two

beautiful

boys, Tanner (12) and Colton (9). I am very lucky.

I did write to Sini earlier this week because I felt comfortable

talking about JRA as

I had this when I was 6 years old. I went into remission for over 20

years. When I was

28 years old I got really sick again. Luckily my mom was there for me

and she told my

doctor's that I had JRA before which was a good thing. I had a fabulous

doctor who listened

to her. Where I live we do not have any RD so she called Edmonton

(bigger city) when I

got fluid on the heart and lungs. The doctor's there told my doctor to

air vac me to Edmonton.

Of course still no diagnosis at this time, but after the RD saw me she

asked me if I was sure

that I had JRA when I was 6 ( at this point I was a little testy so I

said well that's what they

told me and my family), she asked me this BEFORE reading my chart,

after she read my chart

she said you have SD. I thought she maybe should have read my chart

first but whatever.

Finally after a total of 1 month I was back home. I seem to be very

lucky. The predn. worked.

So at this time I take Celebrex very rarely.

Of course about 1 and a half weeks ago I was diagnosised with

Fibromyalgia ( just when you think alright I am doing Ok).

Right now I am working half days that works so far. I come home from

work and nap then go and pick

up my children. I am loving that.

Thank you all for the great information. I am trying to get the money

together to come to the

Stills conference in Las Vegas. Hope I can come.

Sorry about the length of this email apparently I am a little wordy

tonight.

Krista

Grande Prairie, AB Canada

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

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

Report post · June 19, 2005

Welcome Krista,

Good to have you join us. Please feel at home with us.

Smiles, Melt

----- Original Message -----

From: Krista Soetaert

My name is Krista Soetaert I have been on the mailing list for about a

week

Report post · November 17, 2005

, I'm amening your yucks! Call me sheltered, but I had no idea

*anyone* would ever wanna touch their poop, much less do things with

it. I have sensory dysfunction and the LAST thing I want from my poop

is anything but to see it go down the commode! ROFL!

Debi

Report post · November 17, 2005

hi tracy it was hard potty training my daughter but we finally got it. it took

me one weekend to do this. it may take u a little longer but be patient, very

patient. This is very hard on you but autistic children will learn and

eventually catch on. Every hour take her to the restroom, every hour, even

throughout the night and see what happens.

McKinless wrote:

Hi,

I recently joined this group. My 10 yr old daughter

has autism, is non verbal, not fully potty trained and

probably mentally retarded. (although there are days i

swear she knows exactly what I'm saying and what she's

supposed to do)

She's been on a gfcf (gluten/casein free) diet since

she was 4. It has helped a lot with her health issues

(intestinal discomfort, chronic respiratory

infections) and behavior as well. She used to bang her

head and arms, scratch herself, scream for hours,

tantrum no end, almost no eye contact, etc. All of

these stopped within 6 months. Her ability to learn

increased as well. Now, 6 yrs later, she uses sign

language and pecs, can read and write at a

kindergarten level, do math at kind. level. She can

repeat sounds and words when prompted, but does not

have any spontaneous language.

I have tried for YEARS to get her to poop in the

potty. She gets the peepee part but not the poop. Very

frustrating, very gross (I spend 2 out of 3 mornings

cleaning up after her nite time painting experiments).

We've had behaviorists in our home, read every book

and article, nothing works. All I can say is YUK YUK

YUK!!!!There. I feel better now. Thanks.

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

Autism_in_Girls-subscribe

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

Autism_in_Girls-unsubscribe

Report post · October 15, 2006

Hello Kim, First off I would like to welcome you to the group. This is a great

group with both wonderful parents and women on the spectrum.

I hope this does not sound harsh. But, its obvious you suspect a problem in your

daughter(s) or you would not be here. As a mom its your responsibility to get

any thing you think is not right checked out by a professional. If what your

daughter(s) are going through is a phase then that's great but if its not you

just ignored a problem where early intervention is key.

As far as allergies go they are very common in kids on the spectrum and I am

sure lots of moms on here will have advice for that. We suspect allergies in my

daughter as well and we are going to be trying the GF/CF diet soon.

I have learned as a mom that its always best never to ignore your gut. My

problem was I had a gut feeling about my daughter and I had a heck of a time

getting the doctors to listen and getting a diagnosis (we finally got one last

November). My daughter is almost 4 1/2 so it took us almost 3 1/2 years to find

the right doctor.

I would encourage you to start speech with your younger daughter. I would also

encourage you to get you older daughter evaluated by a psychologist for her

emotional problems.

Like I said earlier its best to err on the side of caution.

Good luck and welcome. Please keep us updated.

Missy ('s mom)

new member

Hi, I'm new here. I'm here because I am concerned about my 19 month

old daughter n. At her 18 month old check-up, the doctor asked me

if I would consider a speech therapist because she makes sounds and

gestures, but no intelligible words. I chose to wait until she turns 2

in March, as I know some kids are " late bloomers " . She's already milk

allergic and I have not ruled out a wheat connection either. She's

very sensitive to things. She started exhibiting diaper problems in

August while my husband was at a work convention across the country,

but now it's more frequent (taking off her Pull-Up, she's pooped and

peed on the floor, she tries tasting her own urine and feces) .... she

points at what she likes but does not speak. Sometimes seems not to

hear us but other times shows recognition. Back or tummy rubbing,

brushing hair, or foot and leg rubbing calm her down. She imitates

sirens and sounds, loves lights and motion, loves to dance, loves

remotes and electronic/digital things, shrieks/ " barks " a lot, laughs

for " no reason " , cries and screams for " no reason " ..... other times

seems completely normal. Night time has gotten difficult (from

afternoon to night) as she gets rammy and seems to " flip out " ... hard

to explain that behavior. When we're out in public, she rarely

exhibits that behavior, but sometimes she does .... and then people

just stare at her and me, wondering " what is her problem? " ... how do

I explain, I don't know.

I am hesitant to call in specialists because it could just " be a

phase " ..... I know what the medical go-round is like (because of her

food sensitivities) and I don't want to put her through that again

.... and I'm hoping she'll grow out of all of it and do things when

she is ready to, like she did with walking (on Father's Day). (I know

two other autistic children, one is PDD-NOS, and she's exhibiting

similar behaviors to him.)

My older child will be 8 on Thanksgiving and there was some

question with her on SID or possibly Asperger's, but no pressure so

far to have her evaluated. She excels in school, but has emotional and

mental problems that I'm trying to help her with. With her, also, I'm

hoping she'll " grow out of it " and that things will even out.

I'm here hoping to read other posts and see if I recognize my children

in other parents' concerns .... I've had a sick feeling in my gut but

I'm hoping time will smooth things out.

thanks,

Kim

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Report post · October 15, 2006

Kim, welcome. I totally understand your fears. I have 3 daughters,

9,7, and 4. My 7 yr old has autism.

I mean this in the most kind way, but waiting to get some professional

help is one of the worst things you could do *IF* (and I stress IF)

she has autism or similar disorder. The reason is, a speech therapy

session is harmless. If your daughter is typical, there is nothing her

sitting through a play session (which is what speech sessions are) is

going to harm her development. On the flip side, *if* she has autism,

you getting early intervention could make a SIGNIFICANT change for the

better. My daughter is 7 and doing pretty well right now. I have

friends who waited until 3, 4, 5 yrs old to get help and their

children aren't doing nearly as well.

Your daughter might just be developing in her own way. And she might

not. Don't let the fear, which is overwhelming, keep you from getting

her the help she needs, even if she ends up not needing any help. You

can call your state's early intervention system (found in blue pages)

and request a developmental assessment. It costs nothing. *IF* she's

found to have delays, and it sounds her speech might be a little

delayed (lots of kids can have speech delays and still not have

autism) then you can get speech therapy sessions free through your

early intervention.

As to the symptoms you mentioned, playing with her waste isn't in and

of itself a sign; many kids are curious about how their body works and

curious about what comes out of it. Pointing is a very good sign.

Here's some stuff she should be able to do for her age (taken from

ANDI poster project):

â€œIs Your Child At Risk For Autism?â€

Does your 18-month-old child's language development seem slow?

Has he lost words that he had once mastered?

Is he unable to follow simple commands such as " Bring me your shoes? "

When you speak to him does he look away rather than meet your gaze?

Does he answer to his name?

Do you or others suspect hearing loss?

Does he have an unusually long attention span?

Does he often seem to be in his own world?

At 18 months old, a child will typically do the following:

* Point to objects

* Interact with his siblings

* Bring you items to look at

* Look directly at you when you speak to him

* Follow your gaze to locate an object when you point across the room

* Engage in " pretend play " such as feeding a doll or making a toy dog

bark

HTH,

Debi

Report post · October 15, 2006

Please remember one thing. A specialist doesn't necessarily mean " always

right. " You have to remain calm and centered in your thinking to the best

you can. Trust your instinct and inner judgment.

I can also say for autism that time does not ever smooth things out, but

rather makes things worth if the autism isn't properly diagnosed or handled.

If you have a feeling you child is autistic, have the neuropsychological

evaluation.