Re: Welcome to

August 11, 1999

Thank you all for such a warm welcome.

One of the things I've been asked is:

.. How is doing these days? Has she had

some remissions throughout the years or has it been more of a constant

thing? If she's had remissions, how long was the longest one? Has she needed

to take medicine from the beginning or has she had periods off medicines

and then back on again?

We only saw rashes on the onset. She would get a night sweats. That's when

the fevers were bad too. By the time we got to the doctors in the morning

she would be fine. Because we would give her Tylenol. Doctors said it was a

virus the nurse said JRA. We were going crazy I remember it like it was

yesterday two months later we were sent to MUSC where they told us it was

JRA. The Years have come and gone and

is doing fine, she just got x rays today. They have had her in hand

and knee braces for years now she hates them. Her pain when walking was very

bad at first, She was in a wheel chair when she was five. We use it

sometimes still, if we are going to be doing a lot of walking, Like Disney

World. But she is out of the wheel chair now and up and running with her

sister h who is 6. Blood work stays out of values. Has anybody else

child done this...

Two years ago we had the most freighting experience she was at school and

flared the teacher pushed her to walk through the long hallways from the

lunch room back to her room then to the nurse anyway though she said she was

in severe pain. They called me said she had a stomach ache, I live 2 minutes

away by the time I got there she was in total contractors and all of her

joints frozen. We rushed her to the hospital, for one week she stayed that

way, she could not move anything except her head. When she came out of it

she was fine. Doctor said it was due to stress. Now we home school. She's

fine stress level is down, sed rate is down, no new problems since we took

her out of school.

She stays on her medicines, DR. Silvers here at MUSIC Chalderns Hospital

has been our guiding light.

August 11, 1999

,

How old is ? What was her highest SED rate? Which meds is she on now?

I have a daughter who will be four on Saturday and was diagnosed May

19th of this year. Her SED rate was as high as 90 and is now at 74. She is

allergic to Prednisone, Solumedrol and Indocin killed part of her liver. So

right now she is just on Decaron 8 mg every other day, with 1/2mg on the

other four days and Prilosec 20mg every day. 1mg Decadron = 10mg Prednisone I

think. She is looking great though (apart from Cushingoid features and hair

growth) and running around just fine.

We live in ton just outside of Chicago.

August 12, 1999

Hi ,

's highest SED rate was 88 on on set now she runs 32 to 40. One time

it came down to 15, last year summer by next blood work it was back up.

Her medicines are: Methotrexate 2.5 mg takes 4 each Thursday night.

Ranitidine 150 mg 2x day. Predtsone 5 mg 1x every other day.

Plaquenil 200 mg 1x day. Tolmetin Sodium 400 mg 3x day. Neoral 0.5 mg oral

2x day.

How many on the list are ish decent?

Tomorrow the cure!

August 12, 1999

,

Thanks for the info on 's meds. What are the following: Plaquenil,

Tolmetin Sodium, and Neoral? and how old is she again and her weight? I get

awfully muddled here with every ones ages etc. I wonder if Georgina has a

list of every ones details. If she doesn't may be we could start one. It

would be nice to know how old, weight, length of time with JRA, meds and day

to day symptoms, SED's etc. Somehow it seems to put 's JRA into

perspective when I have someone else to compare her with. I can feel " Oh yes

she's on a low does of that, or that's a high dose " or what ever if you know

what I mean.

January 9, 2000

Kat, I'm so sorry to hear that your son Jordan is experiencing so much

pain right now. The initial flare is often times the worst. Things

should get much easier for him once they begin treating the JRA more

aggressively. Ibuprofin or one of the other NSAID's is usually the first

level of treatment but if that's not enough to control the pain and

other symptoms, and it doesn't sound like it is, they will soon begin a

combination therapy. They had my son Josh taking just Naprosyn in the

beginning and it didn't help much at all. He still had twice daily

fevers and LOTS of inflammation and pain in his joints, that got

progressively worse.

Most times they introduce methotrexate first, which is a medicine they

also use for chemo ~only arthritis patients get it in a MUCH lower dose,

usually beginning with 7.5mgs a week. Usually it's given in 3 little

yellow pills. One of the parents here once suggested squishing them into

those mini-marshmallows to make it easier for younger kids to take. My

son hated the way his liquid medicines tasted so badly that he started

taking pills easily when he was just 6 years old. MTX can take several

weeks/months to begin working but it often helps a lot.

The rheumatologist may also suggest that your son take prednisone, a

corticosteroid, which works much more quickly than the methotrexate. The

relief is often immediate and it can put out the fires of a flare. We've

just been discussing here how alternate day dosing is in many ways more

beneficial than daily doses. My son's initial JRA flare was very severe

and he needed to be hospitalized for two weeks and given steroids

intravenously. When he got home, he still needed them daily. If your son

does need steroids, maybe you can ask about the every other day option

right from the start. That is, if they even suggest steroids. A lot of

children with JRA are able to have the symptoms controlled well enough

without neeeding steroid treatment. It all depends on the individual.

Well, I'm so glad that you found our mailing list. I hope it will help a

little to see you through this difficult time. If you have any questions

or concerns, feel free to mention them. Most of us have been through the

same sort of thing you're going through right now and we'll be glad to

try to help, okay?

Aloha,

Georgina

> Hi Georgina & Everyone else:

> My name is Kat and my JRA child is Jordan. Jordan is 7 years old and

> our middle child. He also suffers from ODT - Obsessive Difficult Temperment

> and that means he has ODD/ADHD/OCD & a moderately severe anxiety disorder.

> So he is on medication for that too. Ok - our JRA situation began just this

> January 1st. Jordan woke up and said his legs hurt, we thought he'd injured

> himself at a party we'd been to the night before. Come to find out on

> Thursday night(1/6) he had JRA - we will not know until the week of Feb. 18th

> what kind of JRA he has. We've been through the bone density test, a full

> body x-ray's, and his touchpoints have been tapped. Now we are living on

> ibuprofin every 6 hours and he is still in much pain - crying out in his

> sleeep his discomfort. So as you can see we are only just beginning down

> this road. Looking forward to learning from those of you who have been

> there/done that before.

> ~Kat~

> " The best thing a woman can do for her children is to love their father "

> Loving Wife to Dave

> Mommy To:

>

> Jordan

> Abigayle

January 9, 2000

>

> Most times they introduce methotrexate first, which is a medicine they

> also use for chemo ~only arthritis patients get it in a MUCH lower dose,

> usually beginning with 7.5mgs a week. Usually it's given in 3 little

> yellow pills. One of the parents here once suggested squishing them into

> those mini-marshmallows to make it easier for younger kids to take. My

> son hated the way his liquid medicines tasted so badly that he started

> taking pills easily when he was just 6 years old. MTX can take several

> weeks/months to begin working but it often helps a lot.

My 3 1/2 year old daughter takes two methotrexate pills once a week. I put

a pill in her mouth and give her a glass of water. She takes a drink and

swallows the pill. Then I give her the second pill; same thing. I'm so

proud of her. I still have problems swallowing pills and I'm 28 years old.

And here is my 3 year old having no problem swallowing her pills.

~Amy

mother to (JRA) 3 1/2 years old

mother to 2 years old

mother to Madeline 7 1/2 months old

January 9, 2000

Hello,

I don't give Tally soda ever so for him, that carbonated, sugarly liquid

is the best thing since his birthday. To get him to take pills at a young

age... I had to bribe him. I told him that the only way I would give some

pepsi, is for him to take his medicine. Now, of course, it doesn't take

pepsi but just some water. Getting him to take a liquid medicine is like

pulling teeth. The hospital only had the benedryl in liquid and it took a

nurse, me, and my mom to open his mouth and get it down him. Not a nice

scene at all.

kathy

January 9, 2000

wow, i feel pretty lucky after reading that alot of the kids wont take liquid

meds. tristan has had his JRA since aug. 98 and is still taking the liquid

methotrexate...without a fight. now the liquid prednisone and zantac are

another story! so i got them in pill form and those along with his other

medicines are crushed into his motrin. cheri

January 24, 2000

Hello Heidi,

It sounds as if that type of announcement would be perfectly appropriate

here. That was very thoughtful of you, to ask first. Now I'm curious

Please do, post about your activity/support group. I'm not sure how many

people here are located in or near CA, though. I'd suggest, also, that

you sign on to the alt.support.arthritis newsgroup and post a message

there too.

Take care,

Georgina

Heiki1@... wrote:

>

> I am in the process of creating an activity/support group for children with

> JA in So CA. Would you allow me to post an announcement on this list to

> solicit individuals who are interested in participating in this program?

> Thanking you in advance for your consideration.

>

> Heidi

January 28, 2000

Hi all,

I just joined your little community and thought I would introduce myself.

Although I don't have a child with JRA, I myself have been living with it

for 22 years, I helped to found the first summer camp in Oklahoma for kids

with JRA as well as having spoken at the AJAO conference on Joint

replacement. I have also been on numerous committees throughout the years.

One of the ways I have always dealt with my flare ups is to move the focus

away from myself whenever things got bad I looked for things I could do to

help other people going though the same pain. Well things are pretty bad

again so here I am (c:

Here is a little bio about me..

Diagnosed at age 12 <puberty.. JRA usually hits with hormonal changes>

Surgeries.. mandibular reconstruction, hip replacements 5 times, shoulder

replacement <so far, 6 more surgeries scheduled for this year>

Happily married to a commercial pilot/ System analyst

3 wonderfully healthy kidlets <Wyatt's birth 2 years ago triggered the

latest flare>

Was a licensed realtor until this flare, now a stay at home/ home schooling

mom.

I'd be more than happy to help or answer any questions that I can!

Hugs and Gods blessing,

Debbie

The Schuh Family

Dan, Debbie, Dottie, Kody and Wyatt

http://members.tripod.com/BudgetScrapbooking/

January 28, 2000

Debbie,

Welcome! I'm also a mother of three kids (all born in 34 months). =)

My oldest was diagnosed in Dec. 98 with Pauci. Now she has progressed to

poly-jra. I'm so glad to hear you have children. I often wonder what is in

store for her in her adult life (kids, jobs and so on...) with her

arthritis. Anyway, it is encouraging to see that you have done all the

" normal " things adults do. =)

God bless you,

Amy

Mother to 3 1/2 years old (poly-jra)

Mother to Andy 2 years old

Mother to Maddie 8

January 28, 2000

Welcome Debbie

I am also another one on the list that has JRA since that age of 8, I am now

25. I am also trying to get stuff started in my state for kids with

juvenile arthritis. But I just won't stop there. My plain is that all

states have something for kids with arhtritis along with awareness of

juvenile arthritis. I have my right hip replaced and also both of my

knee's. Just currently started Enbrel this week with two shots done so far.

I would like it if you would go and look at my jra website and tell me what

you think. Or if you have any good idea's. Well I must be going for now.

Take Care.

JRA World

http://www.geocities.com/jraworld

RE: Welcome to

> From: " The Schuh Family " <dschuh@...>

>

> Hi all,

> I just joined your little community and thought I would introduce myself.

> Although I don't have a child with JRA, I myself have been living with it

> for 22 years, I helped to found the first summer camp in Oklahoma for kids

> with JRA as well as having spoken at the AJAO conference on Joint

> replacement. I have also been on numerous committees throughout the years.

> One of the ways I have always dealt with my flare ups is to move the focus

> away from myself whenever things got bad I looked for things I could do to

> help other people going though the same pain. Well things are pretty bad

> again so here I am (c:

> Here is a little bio about me..

> Diagnosed at age 12 <puberty.. JRA usually hits with hormonal changes>

> Surgeries.. mandibular reconstruction, hip replacements 5 times, shoulder

> replacement <so far, 6 more surgeries scheduled for this year>

> Happily married to a commercial pilot/ System analyst

> 3 wonderfully healthy kidlets <Wyatt's birth 2 years ago triggered the

> latest flare>

> Was a licensed realtor until this flare, now a stay at home/ home

schooling

> mom.

> I'd be more than happy to help or answer any questions that I can!

> Hugs and Gods blessing,

> Debbie

> The Schuh Family

> Dan, Debbie, Dottie, Kody and Wyatt

> http://members.tripod.com/BudgetScrapbooking/

>

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

February 19, 2000

In a message dated 1/28/00 9:48:56 AM Pacific Standard Time,

dschuh@... writes:

<< I helped to found the first summer camp in Oklahoma for kids

with JRA >>

We live in OKC. Where is the camp located? Judy - OKC

February 25, 2000

Hi !

It's nice to have you join us on the list I've missed you, too! How

are you doing these days? Are you still having good results from taking

Enrel? Are you still able to be off of steroids? Hope you haven't had

any problems with your hips. Let us know, okay? That sounds so exciting,

learning to be a helicopter pilot. I hope you're happy and excited about

the upcoming move. How far is Alabama from where you live now? Too bad

it happens around the same time as the Still's Conference, though. That

would be nice to attend. I'd love being able to the people from the

Still's list

Aloha,

Georgina

Hi Georgina

I thought I would join your list! How is Josh doing? How are you

doing? I miss you on the still's list. My husband is going to be

flying helicopters now. We will be moving to Alabama. He will go in

April and I dont think I can move down there until after he graduates

from the officer school which is in June. I will probably miss the

Still's conference because I will be in the middle of moving.

Take care and I'll talk to you soon.

Jay timberwolf@...

Timber Ridge Farms

Check out the StillsNet Weekly Research and News

/subscribe/StillsNet

June 16, 2000

Hi ,

We just now came in from a long day at the beach, so I don't have too

much time to spend online before getting dinner cooked for these two

hungry little children of mine I did want to say hello though and let

you know that I just forwarded your letter to the group. That way,

others can see it as well and I'm sure you'll get a few messages in

response.

My son Josh has the systemic type of JRA, a somewhat severe case that

hasn't remitted in the 5 years since he's had it. He takes quite a few

meds, as does your daughter, and fortunately ... right now it seems to

be controlling his arthritis really well. I would love it if one of

these days he could get off a few of the meds, namely prednisone. Only

time will tell. Still, I'm very grateful for those times, like now, when

he is doing well.

Anyway, I better say goodbye for now. You'll probably have other emails

coming through fairly soon. It hasn't been super busy these days, as

many of the children are out of school for summer break and keeping us

parents more busy than usual

I'll 'talk' to you again, soon,

Aloha,

Georgina

G wrote:

>

> Hello and thank you for the wellcome letter. I was put in touch with this

> group for support and conversation re: JRA. My daughter was diagnosed

> in April of 1997 she was 18 months old at that time, she will be five in

> Oct. We (my husband and I) don't really know a whole lot about JRA, only

> what information we have been able to gather from

> various doctors--we are very new to using the internet and are so

> suprised!!! It has been a very frustrating time with and the

> JRA, she went into a " remission " Jan. of 1999 and had a " flare-up "

> in Jan. this year almost to the day. She is currently on a cocktail

> of meds including Prednisone, methotrexate, Naprosyn, and folic acid.

> We have been advised of a treatment using cortisone injections into

> affected joints, it would require to be put under and I am very

> scared but hopefull of this treatment. I am interested in the experiences

> and results of any others which have also gone through this procedure. Many

> thanks in advance

September 5, 2002

Hi Georgina,

I just found the JRA list today, and I am very glad that I did. We live in

Toronto, and our son has just been diagnosed with systemic juvenile

rheumatoid arthritis. I'm a librarian, so of course I've been researching

the topic like mad, but somehow it's so much more helpful to hear from people

who are actually going through the same types of experiences. I had never

even heard of systemic JRA before was diagnosed. He had a really

high fever for 16 days straight, was admitted to the Hopital for Sick

Children for testing, where they noticed his rash. Once his fever subsided,

he was discharged with the tentative diagnosis of systemic JRA, and two weeks

later, his elbows started to hurt when he put on or took off a shirt. We

think his shoulders are hurting him now as well. He takes Indomethicin

(sp?) and Zantac (because the Indomethicin was hurting his stomache). His

fever was gone for a month but just returned on Sunday, so we're feeling a

little down in the dumps. Hopefully, the rheumatologist will be able to

adjust his medication to reduce the fever (??) Our appointment is in one

week.

Anyway, thanks very much for your welcome!

Pam Bolan (, 4, Systemic JRA)

Moderator wrote:

> Hello,

>

> Welcome to the . I'm glad that you found our list and I want

> to extend my warmest greetings. You can sit back and read some of the

> messages that will be coming your way shortly, to get a feel for things,

> or jump right in whenever you feel ready. You can introduce yourself,

> tell us about your child, ask questions, add to the topic of discussion,

> or begin an entirely new one. You can choose to write as much or as

> little as you feel is appropriate, as often as you'd like. Some days

> there are many posts, other days just a few.

>

> I hope you'll find this mailing list to be informative and enjoyable.

> Everyone on the list either has or knows a child with JRA or has grown

> up with arthritis, themselves. My own interest in JRA began when my 12

> year old son was diagnosed with Systemic Juvenile Rheumatoid

> Arthritis in May, 1995. Before then, I hadn't ever heard of JRA. I

> used to think that arthritis was a disease that only affected adults.

> I didn't know that kids can and do get arthritis, too.

>

> The internet has been a very valuable source of information and

> support for me. We don't have a local Arthritis Support Group nearby

> so I am very grateful to have been able to meet others online whose

> children have this illness. Though we may be many miles apart and

> facing different stages or severities of illness, we do share a common

> bond. Discussing arthritis-related issues with others who may have

> already been through some of the very same situations we're facing,

> and who can share information and offer advice and support, seems to

> make living with JRA a little bit easier.

>

> I'm always looking around for articles that may be of interest to us.

> News about arthritis research, medicines, treatments, etc. As a JRA

> List member, you have access to an incredibly informative archives of

> messages on topics that have previously been discussed here. Just sign

> in and visit /messages , type in

> a key word, and click on the Search Archive button. Press Next after

> each screen to search through remaining messages.

>

> There are several different mail-delivery preference settings that you

> can choose from: individual emails, a daily digest, or you can choose

> to get no mail and to read group postings directly from the site.

> You can change these preferences at any time.

>

> In this group, we hope to be able to share what we have learned

> and to continue learning. I hope that you will find being a list

> member to be a positive and enriching experience and I hope our group

> will become an important source of information and support for you.

>

> Welcome!

>

> Georgina

> List Owner

>

September 6, 2002

Hello Pam Bolan, mom to . my name is and I am a vet of jra now for 35 years.

(currently 47)

I am polyarticular/ankylosing spondylitis, yeah what a mouth full.

Being a librarian with a vast wealth of knowledge and information at your finger tips heps, but the added touch of shared experience is unreplaceable.

As you get to know the many people on this group, you'll find more than information and knowledge, you'll find friendship, compassion, understanding and Bushels of 'Support'.

And as you continue on with these fine folks, you begin to feel like they are, 'All family' as I feel since my enception into the group, one year ago in June!

If you've got a bad day, and it seems as though you just want to screem!

Well we all have a shoulder read and waiting for that screem, so just let it out!

OH yeah, I'm also known to the groups as,

'Uncle Rusty Limbs'

Prayers for your family and 'Especially' your little one, .

aka Rusty Limbs

hey gang! hope all are doing well and having a pain free day!

Uncle Rusty Limbs

On Thu, 05 Sep 2002 22:44:56 -0400 Pamela Bolan <pambolan@...> writes:

Hi Georgina,I just found the JRA list today, and I am very glad that I did. We live inToronto, and our son has just been diagnosed with systemic juvenilerheumatoid arthritis. I'm a librarian, so of course I've been researchingthe topic like mad, but somehow it's so much more helpful to hear from peoplewho are actually going through the same types of experiences. I had nevereven heard of systemic JRA before was diagnosed. He had a reallyhigh fever for 16 days straight, was admitted to the Hopital for SickChildren for testing, where they noticed his rash. Once his fever subsided,he was discharged with the tentative diagnosis of systemic JRA, and two weekslater, his elbows started to hurt when he put on or took off a shirt. Wethink his shoulders are hurting him now as well. He takes Indomethicin(sp?) and Zantac (because the Indomethicin was hurting his stomache). Hisfever was gone for a month but just returned on Sunday, so we're feeling alittle down in the dumps. Hopefully, the rheumatologist will be able toadjust his medication to reduce the fever (??) Our appointment is in oneweek.Anyway, thanks very much for your welcome!Pam Bolan (, 4, Systemic JRA) Moderator wrote:> Hello,>> Welcome to the . I'm glad that you found our list and I want> to extend my warmest greetings. You can sit back and read some of the> messages that will be coming your way shortly, to get a feel for things,> or jump right in whenever you feel ready. You can introduce yourself,> tell us about your child, ask questions, add to the topic of discussion,> or begin an entirely new one. You can choose to write as much or as> little as you feel is appropriate, as often as you'd like. Some days> there are many posts, other days just a few.>> I hope you'll find this mailing list to be informative and enjoyable.> Everyone on the list either has or knows a child with JRA or has grown> up with arthritis, themselves. My own interest in JRA began when my 12> year old son was diagnosed with Systemic Juvenile Rheumatoid> Arthritis in May, 1995. Before then, I hadn't ever heard of JRA. I> used to think that arthritis was a disease that only affected adults.> I didn't know that kids can and do get arthritis, too.>> The internet has been a very valuable source of information and> support for me. We don't have a local Arthritis Support Group nearby> so I am very grateful to have been able to meet others online whose> children have this illness. Though we may be many miles apart and> facing different stages or severities of illness, we do share a common> bond. Discussing arthritis-related issues with others who may have> already been through some of the very same situations we're facing,> and who can share information and offer advice and support, seems to> make living with JRA a little bit easier.>> I'm always looking around for articles that may be of interest to us.> News about arthritis research, medicines, treatments, etc. As a JRA> List member, you have access to an incredibly informative archives of> messages on topics that have previously been discussed here. Just sign> in and visit /messages , type in> a key word, and click on the Search Archive button. Press Next after> each screen to search through remaining messages.>> There are several different mail-delivery preference settings that you> can choose from: individual emails, a daily digest, or you can choose> to get no mail and to read group postings directly from the site.> You can change these preferences at any time.>> In this group, we hope to be able to share what we have learned> and to continue learning. I hope that you will find being a list> member to be a positive and enriching experience and I hope our group> will become an important source of information and support for you.>> Welcome!>> Georgina> List Owner>>

September 6, 2002

Thank you, . I am very glad to be a part of the group.

We had a bit of a rough morning today. was supposed to start

Junior Kindergarten today, but his fever was just too high, and he said

he didn't feel up to it. I know it's only one day, but I just wish

this flare-up hadn't occured right when he was supposed to start school!

He had been so looking forward to it. His fever is a little lower

this afternoon, so I'm hopeful that he might be able to go to school on

Monday. We're so new to this that we don't even know how long flare-ups

can last! The last one was 16 days. Is that typical?

Pam ('s mum, 4, Systemic JRA)

A Morse wrote:

Hello Pam Bolan, mom to . my name is

and I am a vet of jra now for 35 years.(currently 47)I am polyarticular/ankylosing

spondylitis, yeah what a mouth full.Being a librarian with a vast wealth

of knowledge and information at your finger tips heps, but the added touch

of shared experience is unreplaceable.As you get to know the many people

on this group, you'll find more than information and knowledge, you'll

find friendship, compassion, understanding and Bushels of 'Support'.And

as you continue on with these fine folks, you begin to feel like they are,

'All family' as I feel since my enception into the group, one year ago

in June!If you've got a bad day, and it seems as though you just want to

screem!Well we all have a shoulder read and waiting for that screem, so

just let it out!OH yeah, I'm also known to the groups as,'Uncle Rusty Limbs'Prayers

for your family and 'Especially' your little one, . aka Rusty

Limbshey gang! hope all are doing well and having a pain free day!Uncle

Rusty Limbs On Thu, 05 Sep 2002 22:44:56 -0400 Pamela Bolan

<pambolan@...> writes:

Hi

Georgina,

I just found the JRA list today, and I am very glad that I did.

We live in

Toronto, and our son has just been diagnosed with systemic

juvenile

rheumatoid arthritis. I'm a librarian, so of course I've

been researching

the topic like mad, but somehow it's so much more helpful to hear

from people

who are actually going through the same types of experiences.

I had never

even heard of systemic JRA before was diagnosed.

He had a really

high fever for 16 days straight, was admitted to the Hopital for

Sick

Children for testing, where they noticed his rash. Once his

fever subsided,

he was discharged with the tentative diagnosis of systemic JRA,

and two weeks

later, his elbows started to hurt when he put on or took off a

shirt. We

think his shoulders are hurting him now as well. He

takes Indomethicin

(sp?) and Zantac (because the Indomethicin was hurting his stomache).

His

fever was gone for a month but just returned on Sunday, so we're

feeling a

little down in the dumps. Hopefully, the rheumatologist will

be able to

adjust his medication to reduce the fever (??) Our appointment

is in one

week.

Anyway, thanks very much for your welcome!

Pam Bolan (, 4, Systemic JRA)

Moderator wrote:

> Hello,

>

> Welcome to the . I'm glad that you found our list and

I want

> to extend my warmest greetings. You can sit back and read some

of the

> messages that will be coming your way shortly, to get a feel

for things,

> or jump right in whenever you feel ready. You can introduce yourself,

> tell us about your child, ask questions, add to the topic of

discussion,

> or begin an entirely new one. You can choose to write as much

or as

> little as you feel is appropriate, as often as you'd like. Some

days

> there are many posts, other days just a few.

>

> I hope you'll find this mailing list to be informative and enjoyable.

> Everyone on the list either has or knows a child with JRA or

has grown

> up with arthritis, themselves. My own interest in JRA began when

my 12

> year old son was diagnosed with Systemic Juvenile Rheumatoid

> Arthritis in May, 1995. Before then, I hadn't ever heard of JRA.

I

> used to think that arthritis was a disease that only affected

adults.

> I didn't know that kids can and do get arthritis, too.

>

> The internet has been a very valuable source of information and

> support for me. We don't have a local Arthritis Support Group

nearby

> so I am very grateful to have been able to meet others online

whose

> children have this illness. Though we may be many miles apart

and

> facing different stages or severities of illness, we do share

a common

> bond. Discussing arthritis-related issues with others who may

have

> already been through some of the very same situations we're facing,

> and who can share information and offer advice and support, seems

to

> make living with JRA a little bit easier.

>

> I'm always looking around for articles that may be of interest

to us.

> News about arthritis research, medicines, treatments, etc. As

a JRA

> List member, you have access to an incredibly informative archives

of

> messages on topics that have previously been discussed here.

Just sign

> in and visit /messages

, type in

> a key word, and click on the Search Archive button. Press Next

after

> each screen to search through remaining messages.

>

> There are several different mail-delivery preference settings

that you

> can choose from: individual emails, a daily digest, or you can

choose

> to get no mail and to read group postings directly from the

site.

> You can change these preferences at any time.

>

> In this group, we hope to be able to share what we have learned

> and to continue learning. I hope that you will find being a list

> member to be a positive and enriching experience and I hope our

group

> will become an important source of information and support for

you.

>

> Welcome!

>

> Georgina

> List Owner

>

September 6, 2002

Hi Pamela:

Welcome. This list is a great source of information - did you join the related list Georgina developed recently to handle just the research information? It's called JRAnewsandviews and carries a lot of very informative information and the latest research studies, etc.

I live in Kincardine, Ontario. My daughter Mickey was diagnosed at 3 years old with systemic jra. She is now eight. We too, take her to Toronto Sick Kids. Mickey's ped. rheum. is Dr. Rayfel Schneider. He is great. He really takes all the time needed to ask and answer questions, explain treatment choices and options. He talks TO Mickey - asks her how she's feeling, where the trouble spots are, etc, and explains things to her, too. It makes a big difference to have a doctor that treats the child like they matter, like what they say and think is important.

Mickey's fevers used to run for weeks at a time... though with the medications she's on, it has been a long time since the fevers were a problem. The first year or two were really rough, though, before they found the right combination of drugs that worked for her. She is on Prednisone, indomethacin, zantac (used to be cytotec, but it is apparently in very short supply right now) and a sub-q methotrexate injection once per week. Because she is on the methotrexate, she takes folic acid every day, also.

As I am sure you will hear from many on this list, it was the methotrexate that seemed to turn the tide for Mickey. Before that she was on very high doses of prednisone, and while it helped control the fevers, etc, it was a worry that she had to be on such a high dose (she was 3, only weighed 25 lbs, and was getting 20mg pred/day).

This first while will be the hardest on your family and . While the doctors at Sick Kids are all excellent, and I think use the most up-to-date treatment regimens - i.e. very aggressive early treatment - it does take a while, and some trial and error to find what will work best for each child.

Emotionally, it is very hard at first - well, still is in many ways. It often seems like the flares occur at the worst times, making the kids miss things they had really anticipated. Mickey's biggest wish is to be a " regular kid " - one who can go on school outings and not miss special classroom parties or events because she has to go to Toronto for appointments. They always seem to occur on the days she has to be away.

Anyway, once again, this list is a great support... lots of information and lots of useful experiences shared from other parents who have " been there, done that - felt that " . It's an emotional roller coaster for a while, as you search for answers and try to understand why this happened to your child... there are no easy or good answers, unfortunately. No really good " why " answers, anyway, but in many ways, the treatment options at this point in time are many and varied, and generally, most kids can gain a very good quality of life with a bit of time and the proper mix of meds for them. I hope the process of that works quickly for you and .

Lynn

From: Pamela Bolan <pambolan@...>

Reply-

Date: Thu, 05 Sep 2002 22:44:56 -0400

JRA Listserve < >

Subject: Re: Welcome to