hello

[Guest guest]

Hi Cheryl!

I can relate to the paranoia. It gets better...at least it did for me.

lol. How is Merisa doing?

Christie

*Momi* of Sara 9, Sabaa 6, Alia 5, Hana 3 mos (DS/AV Canal Defect

scheduled to be repaired July 31st) and Lily the cat!!!

On Thu, 20 Jun 2002 06:40:03 -0700 (PDT) Cheryl Ezell <ctezell@...>

writes:

>

> Hey from North Carolina! I'm Cheryl, married to Duane and we've got

> four daughters: Kayla (8) and a (6) whom we adopted, and Haley

> (20 months) and Merisa (almost 4 weeks) who are our foster

> daughters. Merisa is our newest (obviously) and has DS. All I

> know is that she has a hole in her heart and will need surgery very

> soon (we see the cardiologist every week) and that I am watching her

> for signs of respiratory distress... to the point of paranoia,

> sleep-deprivation, and exhaustion which must be affecting the rest

> of the family because they are beginning to look at me like I have

> horns growing out of the top of my head, lightning bolts shooting

> from my eyes, and like I'm spitting fire every time I open my mouth.

> So, I guess that's me in a nutshell. Or, maybe I'm the nut in the

> shell... it depends on who you ask right now.

>

>

>

>

>

> Cheryl Ezell

>

>

>

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

>

[Guest guest]

Welcome!!

I am and we live in Colo and are trying to survive the fires so we are

also sleep deprived! I have two children with Down syndrome 10 and

Noah 2. had two holes in his heart and had surgery when he was 7

months. Noah was born with a clubfoot and had two surgeries on his foot. Both

boys are doing well and enjoying life!

We all have strengths that can't be measured by IQ!

Need great information/resources about Down syndrome? Check out

<A HREF= " http://www.csdsa.org " >www.csdsa.org</A>

[Guest guest]

Welcome Cheryl and your family.

My son had two holes in his heart but we did not find that out until he was 6

months. He had the AV. canal surgery at 8 months and is now a thriving four

year old. This is the place for you to be as you and your family prepare for

the surgery. Good luck.

Carolyn

[Guest guest]

Yay!

Christie

*Momi* of Sara 9, Sabaa 6, Alia 5, Hana 3 mos (DS/AV Canal Defect

scheduled to be repaired July 31st) and Lily the cat!!!

On Thu, 20 Jun 2002 16:25:57 EDT JHarmon199@... writes:

> Both

> boys are doing well and enjoying life!

>

>

>

>

[Guest guest]

Hi LInda!

I'm so sorry to hear about what happened! Hope you are much better now!

Hugs, Ling

<< I'm sorry if I've been a bit out of touch. This week has been hectic,

and I am sure it was too much for my fragile body to manage.

I had eaten some vegetable soup in a cafe yesterday at lunch when I was at

the teacher workshop I went to. I don't know if you recall that I have

Irritable Bowel Syndrome (among other things), and that I got a bad

bacterial infection in my intestines and had to be hospitalized for 3 days

back in May? My dr. has me on some new stomach medicine, which helps

greatly, but I still have to be very careful what and when I eat. I knew

that my stomach was feeling very sore and crampy yesterday afternoon. I

hadn't been home too awfully long when I began to throw up. It just got

worse and worse until it was practically non-stop. This went on for hours.

I barely remember , Isaac, and their friend, Tony (a big strong young

man) from across the street carrying me out to the car and taking me to the

ER. They managed to get me to our little hospital and sign me in. I also

barely remember hearing telling first one nurse, then another, then

the dr. about my various heal!

th problems, and instructing them where they would have to put the IV and

why. Both of my wonderful boys waited with me while they gave me shots and

an IV to get my stomach to stop spasming and the vomiting to stop. We spent

several hours in the ER, and then both boys brought me home and helped me

into bed. I slept until just a little bit ago. I am very wiped out today,

and will probably just rest and sleep. I am so thankful to have such good

sons. Even though they are sick themselves, they are always ready to be

counted on to help their tiny mother in a time of need.

I'm sorry to ramble on so.

Love,

>>

[Guest guest]

Oh , I'm so sorry for all you have to endure. I really do admire

you for your strength, I don't know how you manage sometimes. I think

about you often, and hope you are doing well.

Hugs,

hello

Hello everyone,

I'm sorry if I've been a bit out of touch. This week has been hectic,

and I am sure it was too much for my fragile body to manage. I had

eaten some vegetable soup in a cafe yesterday at lunch when I was at the

teacher workshop I went to. I don't know if you recall that I have

Irritable Bowel Syndrome (among other things), and that I got a bad

bacterial infection in my intestines and had to be hospitalized for 3

days back in May? My dr. has me on some new stomach medicine, which

helps greatly, but I still have to be very careful what and when I eat.

I knew that my stomach was feeling very sore and crampy yesterday

afternoon. I hadn't been home too awfully long when I began to throw

up. It just got worse and worse until it was practically non-stop.

This went on for hours. I barely remember , Isaac, and their

friend, Tony (a big strong young man) from across the street carrying me

out to the car and taking me to the ER. They managed to get me to our

little hospital and sign me in. I also barely remember hearing

telling first one nurse, then another, then the dr. about my various

health problems, and instructing them where they would have to put the

IV and why. Both of my wonderful boys waited with me while they gave me

shots and an IV to get my stomach to stop spasming and the vomiting to

stop. We spent several hours in the ER, and then both boys brought me

home and helped me into bed. I slept until just a little bit ago. I am

very wiped out today, and will probably just rest and sleep. I am so

thankful to have such good sons. Even though they are sick themselves,

they are always ready to be counted on to help their tiny mother in a

time of need.

I'm sorry to ramble on so.

Love,

Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Hi

Welcome to the group, glad you found it and that it will be helpful. Im

Kate, in England, and im 18. You will find a lot of help here!

Kate

[Guest guest]

Hi -

I just wanted to welcome you to the group. I am 21 and was diagnosed about

six months ago. If you ever have any questions or just want to talk, I'm

here.

[Guest guest]

try putting cotton ball in his ear, and then an small dollop of petroleum

jelly over it to seal. it definitely keeps the water out. i also have used

the very small bowl covers ( i don't know if they are sold anymore) with the

elastic edges and put them over the ear. it just depended on what my son

wanted to do when he was little, what i used, they didn't have ear plugs for

small children then.

[Guest guest]

Sandi! How funny, I didn't even realize that you sent that email to loop

instead of just me! ) Do you have an appointment with your

rheumatolgist yet?

Kody's blisters in his ears weren't actually blisters (so no swimmer's

ear) but rather a granular abnormal scar tissue. It was very painful.

And he still complains that his ears hurt. He never has complained about

ear pain after tube surgery before and I think this was his 7th set of

tubes. I am a little concerned that he still has pain. His sinuses seem

fine to me, his face is slightly puffy yet, but he doesn't have black

eyes like they said he might. He doesn't like to do the saline nasal

spray though. For Kody I gave up on the waxy ear plugs, never could get

them to stay in right. So I break a cotton ball in half and lather that

sucker up with vaseline and pack it into his ear. It sticks beautifully

and conforms to the ear shape much easier and completely. The ent that

my oldest daughter had (all my kids had tubes even though they are non

pid) told me to not waste my money on ear plugs and taught me to do the

cotton ball vaseline thing.

Diane, Mom to Kody

[Guest guest]

Hi Amy,

Welcome to the group!!

my opinion to your question of treating Stills Disease

(medically) the same as Stills, is that I do believe that

is the standard procedure. Although different diseases,

the same type of meds are used to control both.

As to the difference between the two diseases. I don't

think that RA patients run high fevers (if any) and there

is a " rash " that most Stills patients develop that RA ones

don't. I'm sure other members will give you more info about

the differences between the two diseases.

Getting this Stills disease at age 35...guess what?? That

part isn't wierd! That's about the normal/average age for

AOSD. It *is* a weird disease though, I'm sure you have

already come to that conclusion. Many members of this

support group were very healthy individuals until the Stills

disease. Many had their first bout with the " dragon " (as we

call it) in their early 30's. I am one of those. I have had the

disease continually since 1979. Although everyone in this

group has the same disease (a few members have children

who have it) we all have a different story to tell, and even

some different symptoms. What meds help one, can make

another very sick..etc.

Amy, I am so sorry you were given " diagnosis Stills, " but

as you have, I must tell you that you have done one of the

best things you could for yourself by joining this support

group. They are wonderful, loving people! I have never

regretted becoming a member. I look forward to getting

to know you better, as I'm sure does everyone else in the

group.

Your new friend, Tricia

Please visit the Stills DIsease Web-site at:

www.stillsdisease.org

-- Hello

I am Amy and am a " newbie " with this disease. I live in Pueblo Colorado and

this is the first case any doctor around here has ever seen. The docs are

treating it as if it were RA is this right? At present we are attempting to

lower my Pred. while the Methotrexate builds up. I am 35 and have rarely

been sick, how weird is this? What are the differences between this and RA?

Any new info I would be great. Thanks, Amy

[Guest guest]

Hi Amy, welcome to the group! Im Kate, im 18 and live in England. I hope

your doctors are helping you as much as they can and look forward to getting

to know you! Best wishes, Kate

[Guest guest]

Welcome Amy ;0) There are so many newbies and we welcome everyone. I send

wishes for your medications to help and am looking forward to knowing you

better. My name is Patty and I also throw a few others in there. You may

be interested in coming to chat sometime. We have several each week and

there is always a reminder posted with a link to get to chat. Mon and Thurs

eve's and Wed day. If you would like assistance with the time feel free to

ask. Nice to welcome you, Pattymelt

Hello

> I am Amy and am a " newbie " with this disease. I live in Pueblo Colorado

and

> this is the first case any doctor around here has ever seen. The docs are

> treating it as if it were RA is this right? At present we are attempting

to

> lower my Pred. while the Methotrexate builds up. I am 35 and have rarely

> been sick, how weird is this? What are the differences between this and

RA?

> Any new info I would be great. Thanks, Amy

>

>

> Visit the Still's Disease Message Board

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

>

>

[Guest guest]

The difference in stills and RA are symptoms and antibodies. RA

patients don't have the high spiking cyclic fevers, they dont have

the salmon colored rash, they dont usually have any organ

involvement (except for the lung). RA produces antibodies (in 80

percent of patients have a rheumatoid factor) where still's doesnt (

or at least none have been discovered yet with stills) also the

percentage of joint damage/destruction is higher with RA than with

stills. RA can produce severe deformity of the hands,where they

curl, twist and turn outward and I dont know of any cases of stills

patients with that level of disability with their hands. Stills

primarily attacks the hips and wrists and other large weight bearing

joints such as knees, it can involve all joints. Most stills

patients tend to have extremely elevated levels of ferritin during

the onset, this has not been noted with RA. Some of the same

cytokines are involved with both stills and RA, namely tnf-a, and IL-

1 and IL-6. enbrel targets tnf-a and kineret targets Interleuken 1

or 6 cant remember which off hand . RA is more prevelant in women,

where stills is equal among men and women. The onset of stills is

more common in ages 17-35, but it can occour at a later age than

35.

They are both treated the same with dmards, biologic agents,

prednisone and nsaids and opiods for pain control.

Since they are treated the same, and if you have mostly joint

involvement instead of systemic involvement your doc may just refer

to you having RA now. while that is not actually the case, the docs

find it easier to use with insurance compaines and disability claims.

hope this helps some

> I am Amy and am a " newbie " with this disease. I live in Pueblo

Colorado and

> this is the first case any doctor around here has ever seen. The

docs are

> treating it as if it were RA is this right? At present we are

attempting to

> lower my Pred. while the Methotrexate builds up. I am 35 and have

rarely

> been sick, how weird is this? What are the differences between

this and RA?

> Any new info I would be great. Thanks, Amy

[Guest guest]

Hello Janaka, I seem to be doing pretty well with my regular doctor. I still

haven't visited a " Rhumey " but, I am certain that my doc is treating my

Stills the same as a specialist would. Perhaps you can find someone closer

who you can trust. AMy

[Guest guest]

Hi, Jenaka there are a couple of people on the list from Salt Lake City and

that region that you can talk to about the docs there. Several years ago

we had a lady on the list who was in Wyoming, her doc was in Hole I

believe, anyway he was pretty good, I dont know what happened to her, we

havent heard from her in several years. Her name was , I cant remember

her last name.

[Guest guest]

Dear Jenaka,

I want to welcome you and your husband. I am so sorry that we do have to

meet this way, but you have definitely come to the right place...for BOTH of

you. I always tell everyone, that we are here for others, such as yourself

too. It is very hard being in your place and watching someone you love,

change so drastically, so fast. You will both find much comfort here. My

best to you both and I look forward to getting to know you both better, and

I am hoping that he has some better days coming. Welcome.

Love, Sue #2

-- Hello

Hello group,

my name is Jenaka and my husband got diagnosed with Stills about 6-8

weeks ago. He started treatment with Predneson and Methotraxate right

away and by now he is eating again. There for a while he would or

could not eat because he was in a lot of pain ( shoulders, hips,

arms, knees, etc.).

I am the Caretaker here and it is very frustrating and hurtful for me

to see him going through all of this. A little over 2 years ago he

weight almost 200 lbs. and did blacksmithing for a living, now I have

to help him drink a cup of coffee.

I am glad I found this group because now at least I have someone to

talk to that will understand what I am talking about. The doctors

here in Wyoming have not even heared of Stills disease and they do

not know what to tell me. His doctor that treats him now is Dr. Silas

from the Uni. Hospital in Salt Lake City, Utah and is is a 5 hour

drive for us to go there. Thank you group for beeing here, it will be

a big help to me and my husband.

Jenaka

[Guest guest]

may I suggest he consider adding Arava to the cocktail. Helped me alot!

Hello

> Hello group,

> my name is Jenaka and my husband got diagnosed with Stills about 6-8

> weeks ago. He started treatment with Predneson and Methotraxate right

> away and by now he is eating again. There for a while he would or

> could not eat because he was in a lot of pain ( shoulders, hips,

> arms, knees, etc.).

> I am the Caretaker here and it is very frustrating and hurtful for me

> to see him going through all of this. A little over 2 years ago he

> weight almost 200 lbs. and did blacksmithing for a living, now I have

> to help him drink a cup of coffee.

> I am glad I found this group because now at least I have someone to

> talk to that will understand what I am talking about. The doctors

> here in Wyoming have not even heared of Stills disease and they do

> not know what to tell me. His doctor that treats him now is Dr. Silas

> from the Uni. Hospital in Salt Lake City, Utah and is is a 5 hour

> drive for us to go there. Thank you group for beeing here, it will be

> a big help to me and my husband.

> Jenaka

>

>

>

> Visit the Still's Disease Message Board

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

>

>

[Guest guest]

Donna!!!!!

Glad to see you finally made it here. LOL *horrormoans* LOL Funny! Can't

wait to follow your posts and learn from you too.

Gail :-)

<< Greetings, Group!

I am Donna, the mom of a wonderful 20 year old boy (man!) named Monty,

affectionately referred to as MontyMan! Somehow I met Dodi on-line and was

so encouraged! We live in Southern Louisiana, and duel diagnosis will not

be tolorated here for some reason. I have been told over and over that

Monty

is Downs....not Autistic. Yah, right! He has 12 out of 14 Autistic

Tendacies....after being frustrated beyond reason at the school system (and

medical system) I resolved to tend to his needs MY way! We have done quite

well together. He is still in school, and his placement for the past three

years has been good for him. He loves his school, and has a girlfriend!

He

functions on a 3 to 5 year old level, except when it comes to horrormoans

(not mispelled! lol) and they are normal for a 20 year old! He is

extremely

strong and way too cute. As far as I can tell, Monty is the only one in our

area who is ds-austic. I have felt quite isolated thru the years, as I feel

out on a limb all alone.....Dodi is the one who has helped me the most! I

look forward to 'meeting' all of you and learning and sharing things

concerning our special kids....and hope I can be of help to someone, too.

>>

[Guest guest]

In a message dated 8/9/02 6:24:38 PM Eastern Daylight Time, dtycer@...

writes:

> He loves his school, and has a girlfriend! He

> functions on a 3 to 5 year old level, except when it comes to horrormoans

> (not mispelled! lol) and they are normal for a 20 year old! He is

> extremely

> strong and way too cute. As far as I can tell, Monty is the only one in

> our

> area who is ds-austic. I have felt quite isolated thru the years, as I

> feel

> out on a limb all alone...

Hi Donna, welcome to the group. You gave me a good chuckle. I like Monty

already. Glad to see you have found us. You'll be the second Donna on this

list that I know of.

Diane (mom to Rochelle-6 ds/asd and Danny 8-ld/asd)

[Guest guest]

Hi , I'm fairly new to the list and actually just doing the research on

soap and lotion making

for the last week or so, but hope to get started stirring soon.

Welcome!

Pam

> Hello everyone,

> I just joined the group yesterday.

> The only thing I make is soap for friends and family. >

[Guest guest]

Hi, I've taken several classes given at the City Colleges here in CA. Check

out Chicago.

Shirley Ann

[Guest guest]

All she doing is speaking da truth. Do ur thing ! I got ur back girl.

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

In a message dated 8/21/02 10:51:25 PM Eastern Daylight Time,

turbokev@... writes:

> u need educated

>

none of dis has shit to do w/ u. is speaking the truth, get

over it!

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

this should not even be posted on the list.... Unless the original emailer

() gave permission to pass her email on to the list. The list is

" public " and should not be used to solve private issue between members. It

was very distasteful to forward an email like this.....

List Owner