Re: Welcome to @onelist.com

[Guest guest]

I got the results of her SED rate today it still high at 51, but it's an

improvement from 70, we'll see what happens next month. This morning she had

a pain in her knee for a hot while, but now she's off to the beach! How I

used to take the fact that she would boundinto our room in the early morning.

Now very time it seems a miracle! Thanks for the details on the little girl

who lived near you. We all hope that will take a similar path of

course. But who knows.

[Guest guest]

Hi ,

It's always nice to hear that children are getting a treatment that's working

for

them and helping to relieve their pain and other symptoms. I'm glad is

feeling well enough right now to enjoy some fun activities. I hope it stays like

this for a long time! This illness sure does have a way of teaching us to

appreciate the good things in life. Helen Keller once said something to the

effect of: The best things in life cannot be seen or touched. They are things

that are felt only in our heart :-)

Take care,

Georgina

Skis@... wrote:

> I got the results of her SED rate today it still high at 51, but it's an

> improvement from 70, we'll see what happens next month. This morning she had

> a pain in her knee for a hot while, but now she's off to the beach! How I

> used to take the fact that she would boundinto our room in the early morning.

> Now very time it seems a miracle! Thanks for the details on the little girl

> who lived near you. We all hope that will take a similar path of

> course. But who knows.

[Guest guest]

Hi everyone on the list! I would like to introduce myself I am I am in

ton, SC

and my daughter has Systemic Juvenile Rheumatoid Arthritis she was

diagnosed at 18 months old she is now 9 1/2. She takes

Tolmetin,Ranitidine,Plaquenil,Neoral,Prednisone,Methotrexate.

We don't have a support group here and have been on our own all these years.

We have been getting the JRA news letters have wanted to go to the

conventions but they are always so far away and costly. I have joined this

list in hopes of making new friends and knowing that I am not alone, would

like to know if anyone is in the near of ton, SC.

[Guest guest]

Welcome to the list. I am and I have a 4 year old daughter (4 next

week) called . She was diagnosed 3 months ago. She had a severe

reaction to her NSAID and her liver was badly damaged and killed in areas.

Anyway her liver is nearly better now (but what a scare)! but she is only on

Steroids until her liver has really quieted down. She is on large doses of IV

Decaron and still has a SED rate of 74! She runs around and can do every

thing just like other kids now but has terrible mood swings. We live just

outside Chicago, I am British and my husband American.

[Guest guest]

,

You are not alone! Damien is similar to , but almost 5 years old.

Welcome to the group - if you go to the member area at onelist.com

you might find some photos of our kids.....

Oliver (London)

> Re: [ ] Welcome to onelist

>

> From: LinGS544@...

>

> Hi everyone on the list! I would like to introduce myself I am I am

> in

> ton, SC

> and my daughter has Systemic Juvenile Rheumatoid Arthritis she was

> diagnosed at 18 months old she is now 9 1/2. She takes

> Tolmetin,Ranitidine,Plaquenil,Neoral,Prednisone,Methotrexate.

> We don't have a support group here and have been on our own all these

> years.

> We have been getting the JRA news letters have wanted to go to the

> conventions but they are always so far away and costly. I have joined

> this

> list in hopes of making new friends and knowing that I am not alone, would

>

> like to know if anyone is in the near of ton, SC.

>

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

[Guest guest]

welcome to the list I hope that you feel at home here >

>From: Adrienne Ogilvie <aogilvie@...>

>Reply- onelist

> " ' onelist' " < onelist>

>Subject: RE: [ ] Welcome to onelist

>Date: Fri, 29 Oct 1999 14:16:39 +0200

>MIME-Version: 1.0

>From errors-80038-1785-shancna Fri Oct 29 05:21:53 1999

>Received: from [209.207.164.213] by hotmail.com (3.2) with ESMTP id

>MHotMailB9E2DC610013D82197A6D1CFA4D546DF0; Fri Oct 29 05:21:53 1999

>Received: (qmail 29023 invoked by alias); 29 Oct 1999 12:21:35 -0000

>Received: (qmail 29010 invoked from network); 29 Oct 1999 12:21:34 -0000

>Received: from unknown (209.207.164.239) by pop3.onelist.com with QMQP; 29

>Oct 1999 12:21:34 -0000

>Received: from unknown (HELO vectra.mnet.co.za) (196.36.217.226) by

>mta1.onelist.com with SMTP; 29 Oct 1999 12:21:40 -0000

>Received: by gauntlet.mnet.co.za with Internet Mail Service (5.5.2448.0) id

><VW0X4GLL>; Fri, 29 Oct 1999 14:12:45 +0200

>Message-ID: <915D5201F4D8D111B6220060080EA656029EE412@...>

>X-Mailer: Internet Mail Service (5.5.2448.0)

>Mailing-List: list onelist; contact -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>From: Adrienne Ogilvie <aogilvie@...>

>

>Hi there

>

> is 6 1/2 now and the diagnosis came through this week, although we

>have suspected it for a while.

>

>For over two years I have taken her to various paediatricians and doctors,

>she's been diagnosed with everything from kidney problems to psoriasis.

>The

>silly thing is that she's been seen for the rash, or she's been seen for

>the

>temperatures. The joint pain was only ever in her knees and I assumed that

>was probably growing pains. No-one ever put all three together. Only in

>the last six months has she experienced joint pain elsewhere.

>

>Last Friday she had bone marrow tests to check for malignancies and other

>things, and finally her paediatrician referred us to one of the only

>Doctors

>in Johannesburg who know anything about Systemic Juvenile Chronic (as we

>call it this side of the ocean) Arthritis.

>

>Anyway, I have since spent a lot of time on the internet researching it and

>have found some excellent sites. She is on Methatrexate at the moment,

>anti

>- inflamatories and folic acid. I am starting her at the physiotherapist

>on

>Tuesday, who says she will see her for a while and teach me how I can help

> myself. She is also off to the opthalmologist next week to have a

>slit lamp test or something or other!

>

>I believe I also need to take her for liver tests to see how the medicine

>is

>affecting her and I guess I will just have to take it from here.

>

>I'm not really sure what I'm in for although it looks like a lot from what

>I've been reading. The poor kid has a hard few years ahead of her, and it

>could be a permanent thing too. She was very sad when I told her that all

>the aches and pains might not go away just like that, and I am wondering

>how

>to explain all the rest to her. I worry about what happens next year at

>school with learning to write and the problems in her wrists, also about

>sports if she wants to do sports. I'm worried for her about making

>friends,

>since I've been going through a divorce in the last six months I assumed

>she

>was emotionally finished which explained her lack of appetite and energy.

>She is a quiet little thing and it has affected her ability to make friends

>this year. Last year she used to tell me all the names of her little

>friends, this year she tends to fall asleep the moment she gets in the car.

>

>I also worry about the bills, and I am worried that she will feel different

>to the other kids at school. The only " good " thing about being told that

>it

>is a long term chronic illness is that you immediately accept the

> " finality "

>of it. You don't have to worry over two weeks of illness or three months,

>I've skipped right to the part where it is going to be a long time and that

>is the way that it is.

>

>I guess that is it. In the back of my head I worry about her little

>brother

>- he is only two, sometimes both kids in a family can get it I see.

>

>Medical Aid in this country is back to front, so I am going to have to stay

>in my job for a long while, if I ever have to change medical aids, they

>will

>put all sorts of loadings on me for 's arthritis if they don't exclude

>cover for her all together!

>

>It is quite overwhelming at the moment. I'm sure as time goes by I'll be

>able to see the top of it, but untill then I'm just going to have to hang

>in

>there I guess. It helps so much to read other stories, know that there are

>other parents and kids who have been through it and are going through it.

>

>Thanks!

>

>Ady Ogilvie

>M-Net Marketing

>329 5118

>fax 329 5167

>aogilvie@...

>cell 083 348 0606

>

> > Re: [ ] Welcome to onelist

> >

> > From: " Janet & Gilbert Moyer " <gjam@...>

> >

> > Hi Adrienne,

> >

> > Well, maybe you can start off by telling us about your child, with JRA.

>We

> > are always sending questions and answers to each other. If you have a

> > question, it will be seen by all of the members on the JRA list, and you

> > may

> > get a lot of responses that way. Also, when you are reading other

>letters

> > posted, you are more than welcome to respond. We always can use advice.

>My

> > daughter Mandy is 12. She has had JRA since she was about 18 months old.

> > WELCOME! Janet Moyer

> >

> > [ ] Welcome to onelist

> > > >

> > > > Hello,

> > > >

> > > > Welcome to the ! I am glad you found our list and

> > > > I want to extend my warmest greetings. OneList.com certainly does

> > > > make things very simple, even for those of us who don't have a lot

>of

> > > > computer experience. So jump right in, whenever you feel ready. You

> > > > can introduce yourself, tell us about your child's medical history,

> > ask

> > > > any

> > > > questions that you may have, add to the topic of discussion, or talk

> > about

> > > > whatever's on your mind. You can choose to write as much or as

>little

> > > > as you feel is appropriate. As often as you want. Some days there's

> > lots

> > > > of

> > > > posts, other days it's pretty quiet.

> > > >

> > > > I hope you'll find this email list to be both informative and

> > enjoyable.

> > > > Everyone on the list either has or knows a child who has JRA. My

> > interest

> > > > in this topic began when my son, , was diagnosed with Systemic

> > > > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> > > > caregivers, I believe it's important for us to learn as much as we

>can

> > > > about this illness. It's very helpful, in terms of understanding how

> > our

> > > > children are affected and in learning strategies for coping

> > effectively

> > > > with the uncertainties we sometimes face.

> > > >

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

> > > > support and friendship for me. I am very grateful to have met others

> > > > online

> > > > whose children also have this illness. Somehow, it makes things a

> > > > little bit easier. Though we may be many miles apart and facing

> > different

> > > > stages and severities of illness, we do share a common bond. It's

>nice

> > > > to be able to discuss things with others who understand what we're

> > > > going through and who may have already been through the same

> > > > situations. I'm always looking around online for articles that may

>be

> > > > of interest to us, news about medicines, treatments, etc. I hope to

>be

> > > > able

> > > > to share what I have learned and to continue learning. And I hope

> > > > that you, too, will find it to be be a very positive and friendly

> > > > experience.

> > > >

> > > >

> > > > Once again ... WELCOME!

> > > >

> > > > Hoping all is well with you and your families,

> > > > Georgina

> > >

> > > > Visit my homepage for a list of sites with info on childhood

> > arthritis:

> > > http://www.geocities.com/Heartland/Village/8414/

> >

> > > Visit my homepage for a list of sites with info on childhood

>arthritis:

> > http://www.geocities.com/Heartland/Village/8414/

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Adi

Welcome to one list tell us about your self We share medicines results,

problems joy a little bit of everything. My daughter is she has JRA

since 18 months old.

[Guest guest]

Hi there

Ok, so what do I do now? Sorry to sound blonde, I've never really used this

kind of internet facility before!

thanks

Ady Ogilvie

M-Net Marketing

329 5118

fax 329 5167

aogilvie@...

cell 083 348 0606

> [ ] Welcome to onelist

>

> Hello,

>

> Welcome to the ! I am glad you found our list and

> I want to extend my warmest greetings. OneList.com certainly does

> make things very simple, even for those of us who don't have a lot of

> computer experience. So jump right in, whenever you feel ready. You

> can introduce yourself, tell us about your child's medical history, ask

> any

> questions that you may have, add to the topic of discussion, or talk about

> whatever's on your mind. You can choose to write as much or as little

> as you feel is appropriate. As often as you want. Some days there's lots

> of

> posts, other days it's pretty quiet.

>

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

> Everyone on the list either has or knows a child who has JRA. My interest

> in this topic began when my son, , was diagnosed with Systemic

> Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> caregivers, I believe it's important for us to learn as much as we can

> about this illness. It's very helpful, in terms of understanding how our

> children are affected and in learning strategies for coping effectively

> with the uncertainties we sometimes face.

>

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

> support and friendship for me. I am very grateful to have met others

> online

> whose children also have this illness. Somehow, it makes things a

> little bit easier. Though we may be many miles apart and facing different

> stages and severities of illness, we do share a common bond. It's nice

> to be able to discuss things with others who understand what we're

> going through and who may have already been through the same

> situations. I'm always looking around online for articles that may be

> of interest to us, news about medicines, treatments, etc. I hope to be

> able

> to share what I have learned and to continue learning. And I hope

> that you, too, will find it to be be a very positive and friendly

> experience.

>

>

> Once again ... WELCOME!

>

> Hoping all is well with you and your families,

> Georgina

[Guest guest]

Hi there

is 6 1/2 now and the diagnosis came through this week, although we

have suspected it for a while.

For over two years I have taken her to various paediatricians and doctors,

she's been diagnosed with everything from kidney problems to psoriasis. The

silly thing is that she's been seen for the rash, or she's been seen for the

temperatures. The joint pain was only ever in her knees and I assumed that

was probably growing pains. No-one ever put all three together. Only in

the last six months has she experienced joint pain elsewhere.

Last Friday she had bone marrow tests to check for malignancies and other

things, and finally her paediatrician referred us to one of the only Doctors

in Johannesburg who know anything about Systemic Juvenile Chronic (as we

call it this side of the ocean) Arthritis.

Anyway, I have since spent a lot of time on the internet researching it and

have found some excellent sites. She is on Methatrexate at the moment, anti

- inflamatories and folic acid. I am starting her at the physiotherapist on

Tuesday, who says she will see her for a while and teach me how I can help

myself. She is also off to the opthalmologist next week to have a

slit lamp test or something or other!

I believe I also need to take her for liver tests to see how the medicine is

affecting her and I guess I will just have to take it from here.

I'm not really sure what I'm in for although it looks like a lot from what

I've been reading. The poor kid has a hard few years ahead of her, and it

could be a permanent thing too. She was very sad when I told her that all

the aches and pains might not go away just like that, and I am wondering how

to explain all the rest to her. I worry about what happens next year at

school with learning to write and the problems in her wrists, also about

sports if she wants to do sports. I'm worried for her about making friends,

since I've been going through a divorce in the last six months I assumed she

was emotionally finished which explained her lack of appetite and energy.

She is a quiet little thing and it has affected her ability to make friends

this year. Last year she used to tell me all the names of her little

friends, this year she tends to fall asleep the moment she gets in the car.

I also worry about the bills, and I am worried that she will feel different

to the other kids at school. The only " good " thing about being told that it

is a long term chronic illness is that you immediately accept the " finality "

of it. You don't have to worry over two weeks of illness or three months,

I've skipped right to the part where it is going to be a long time and that

is the way that it is.

I guess that is it. In the back of my head I worry about her little brother

- he is only two, sometimes both kids in a family can get it I see.

Medical Aid in this country is back to front, so I am going to have to stay

in my job for a long while, if I ever have to change medical aids, they will

put all sorts of loadings on me for 's arthritis if they don't exclude

cover for her all together!

It is quite overwhelming at the moment. I'm sure as time goes by I'll be

able to see the top of it, but untill then I'm just going to have to hang in

there I guess. It helps so much to read other stories, know that there are

other parents and kids who have been through it and are going through it.

Thanks!

Ady Ogilvie

M-Net Marketing

329 5118

fax 329 5167

aogilvie@...

cell 083 348 0606

> Re: [ ] Welcome to onelist

>

> From: " Janet & Gilbert Moyer " <gjam@...>

>

> Hi Adrienne,

>

> Well, maybe you can start off by telling us about your child, with JRA. We

> are always sending questions and answers to each other. If you have a

> question, it will be seen by all of the members on the JRA list, and you

> may

> get a lot of responses that way. Also, when you are reading other letters

> posted, you are more than welcome to respond. We always can use advice. My

> daughter Mandy is 12. She has had JRA since she was about 18 months old.

> WELCOME! Janet Moyer

>

> [ ] Welcome to onelist

> > >

> > > Hello,

> > >

> > > Welcome to the ! I am glad you found our list and

> > > I want to extend my warmest greetings. OneList.com certainly does

> > > make things very simple, even for those of us who don't have a lot of

> > > computer experience. So jump right in, whenever you feel ready. You

> > > can introduce yourself, tell us about your child's medical history,

> ask

> > > any

> > > questions that you may have, add to the topic of discussion, or talk

> about

> > > whatever's on your mind. You can choose to write as much or as little

> > > as you feel is appropriate. As often as you want. Some days there's

> lots

> > > of

> > > posts, other days it's pretty quiet.

> > >

> > > I hope you'll find this email list to be both informative and

> enjoyable.

> > > Everyone on the list either has or knows a child who has JRA. My

> interest

> > > in this topic began when my son, , was diagnosed with Systemic

> > > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> > > caregivers, I believe it's important for us to learn as much as we can

> > > about this illness. It's very helpful, in terms of understanding how

> our

> > > children are affected and in learning strategies for coping

> effectively

> > > with the uncertainties we sometimes face.

> > >

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

> > > support and friendship for me. I am very grateful to have met others

> > > online

> > > whose children also have this illness. Somehow, it makes things a

> > > little bit easier. Though we may be many miles apart and facing

> different

> > > stages and severities of illness, we do share a common bond. It's nice

> > > to be able to discuss things with others who understand what we're

> > > going through and who may have already been through the same

> > > situations. I'm always looking around online for articles that may be

> > > of interest to us, news about medicines, treatments, etc. I hope to be

> > > able

> > > to share what I have learned and to continue learning. And I hope

> > > that you, too, will find it to be be a very positive and friendly

> > > experience.

> > >

> > >

> > > Once again ... WELCOME!

> > >

> > > Hoping all is well with you and your families,

> > > Georgina

> >

> > > Visit my homepage for a list of sites with info on childhood

> arthritis:

> > http://www.geocities.com/Heartland/Village/8414/

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi there

Thanks - I think I just might do that!

If anybody else out there has had a little one on methatrexate I would be

interested in finding out what sort of side effects it has had. I also

realise that each person reacts differently, but still interesting to find

out.

ta

Ady Ogilvie

M-Net Marketing

> Re: [ ] Welcome to onelist

> > >

> > > From: " Janet & Gilbert Moyer " <gjam@...>

> > >

> > > Hi Adrienne,

> > >

> > > Well, maybe you can start off by telling us about your child, with

> JRA.

> >We

> > > are always sending questions and answers to each other. If you have a

> > > question, it will be seen by all of the members on the JRA list, and

> you

> > > may

> > > get a lot of responses that way. Also, when you are reading other

> >letters

> > > posted, you are more than welcome to respond. We always can use

> advice.

> >My

> > > daughter Mandy is 12. She has had JRA since she was about 18 months

> old.

> > > WELCOME! Janet Moyer

> > >

> > > [ ] Welcome to onelist

> > > > >

> > > > > Hello,

> > > > >

> > > > > Welcome to the ! I am glad you found our list and

> > > > > I want to extend my warmest greetings. OneList.com certainly does

> > > > > make things very simple, even for those of us who don't have a lot

>

> >of

> > > > > computer experience. So jump right in, whenever you feel ready.

> You

> > > > > can introduce yourself, tell us about your child's medical

> history,

> > > ask

> > > > > any

> > > > > questions that you may have, add to the topic of discussion, or

> talk

> > > about

> > > > > whatever's on your mind. You can choose to write as much or as

> >little

> > > > > as you feel is appropriate. As often as you want. Some days

> there's

> > > lots

> > > > > of

> > > > > posts, other days it's pretty quiet.

> > > > >

> > > > > I hope you'll find this email list to be both informative and

> > > enjoyable.

> > > > > Everyone on the list either has or knows a child who has JRA. My

> > > interest

> > > > > in this topic began when my son, , was diagnosed with

> Systemic

> > > > > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> > > > > caregivers, I believe it's important for us to learn as much as we

>

> >can

> > > > > about this illness. It's very helpful, in terms of understanding

> how

> > > our

> > > > > children are affected and in learning strategies for coping

> > > effectively

> > > > > with the uncertainties we sometimes face.

> > > > >

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

> > > > > support and friendship for me. I am very grateful to have met

> others

> > > > > online

> > > > > whose children also have this illness. Somehow, it makes things a

> > > > > little bit easier. Though we may be many miles apart and facing

> > > different

> > > > > stages and severities of illness, we do share a common bond. It's

> >nice

> > > > > to be able to discuss things with others who understand what

> we're

> > > > > going through and who may have already been through the same

> > > > > situations. I'm always looking around online for articles that may

>

> >be

> > > > > of interest to us, news about medicines, treatments, etc. I hope

> to

> >be

> > > > > able

> > > > > to share what I have learned and to continue learning. And I hope

> > > > > that you, too, will find it to be be a very positive and friendly

> > > > > experience.

> > > > >

> > > > >

> > > > > Once again ... WELCOME!

> > > > >

> > > > > Hoping all is well with you and your families,

> > > > > Georgina

> > > >

> > > > > Visit my homepage for a list of sites with info on childhood

> > > arthritis:

> > > > http://www.geocities.com/Heartland/Village/8414/

> > >

> > > > Visit my homepage for a list of sites with info on childhood

> >arthritis:

> > > http://www.geocities.com/Heartland/Village/8414/

> >

> >>Visit my homepage for a list of sites with info on childhood arthritis:

> >http://www.geocities.com/Heartland/Village/8414/

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Adrienne,

Well, maybe you can start off by telling us about your child, with JRA. We

are always sending questions and answers to each other. If you have a

question, it will be seen by all of the members on the JRA list, and you may

get a lot of responses that way. Also, when you are reading other letters

posted, you are more than welcome to respond. We always can use advice. My

daughter Mandy is 12. She has had JRA since she was about 18 months old.

WELCOME! Janet Moyer

[ ] Welcome to onelist

> >

> > Hello,

> >

> > Welcome to the ! I am glad you found our list and

> > I want to extend my warmest greetings. OneList.com certainly does

> > make things very simple, even for those of us who don't have a lot of

> > computer experience. So jump right in, whenever you feel ready. You

> > can introduce yourself, tell us about your child's medical history, ask

> > any

> > questions that you may have, add to the topic of discussion, or talk

about

> > whatever's on your mind. You can choose to write as much or as little

> > as you feel is appropriate. As often as you want. Some days there's lots

> > of

> > posts, other days it's pretty quiet.

> >

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

> > Everyone on the list either has or knows a child who has JRA. My

interest

> > in this topic began when my son, , was diagnosed with Systemic

> > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> > caregivers, I believe it's important for us to learn as much as we can

> > about this illness. It's very helpful, in terms of understanding how our

> > children are affected and in learning strategies for coping effectively

> > with the uncertainties we sometimes face.

> >

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

> > support and friendship for me. I am very grateful to have met others

> > online

> > whose children also have this illness. Somehow, it makes things a

> > little bit easier. Though we may be many miles apart and facing

different

> > stages and severities of illness, we do share a common bond. It's nice

> > to be able to discuss things with others who understand what we're

> > going through and who may have already been through the same

> > situations. I'm always looking around online for articles that may be

> > of interest to us, news about medicines, treatments, etc. I hope to be

> > able

> > to share what I have learned and to continue learning. And I hope

> > that you, too, will find it to be be a very positive and friendly

> > experience.

> >

> >

> > Once again ... WELCOME!

> >

> > Hoping all is well with you and your families,

> > Georgina

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

My daughter Mandy has been on MTX only 2 months......she has been on

Tolmetin ,and plaquenil for years now. She is not on prednisone. Janet

[ ] Welcome to onelist

> > > > > >

> > > > > > Hello,

> > > > > >

> > > > > > Welcome to the ! I am glad you found our list and

> > > > > > I want to extend my warmest greetings. OneList.com certainly

does

> > > > > > make things very simple, even for those of us who don't have a

lot

> >

> > >of

> > > > > > computer experience. So jump right in, whenever you feel ready.

> > You

> > > > > > can introduce yourself, tell us about your child's medical

> > history,

> > > > ask

> > > > > > any

> > > > > > questions that you may have, add to the topic of discussion, or

> > talk

> > > > about

> > > > > > whatever's on your mind. You can choose to write as much or as

> > >little

> > > > > > as you feel is appropriate. As often as you want. Some days

> > there's

> > > > lots

> > > > > > of

> > > > > > posts, other days it's pretty quiet.

> > > > > >

> > > > > > I hope you'll find this email list to be both informative and

> > > > enjoyable.

> > > > > > Everyone on the list either has or knows a child who has JRA. My

> > > > interest

> > > > > > in this topic began when my son, , was diagnosed with

> > Systemic

> > > > > > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents

and

> > > > > > caregivers, I believe it's important for us to learn as much as

we

> >

> > >can

> > > > > > about this illness. It's very helpful, in terms of understanding

> > how

> > > > our

> > > > > > children are affected and in learning strategies for coping

> > > > effectively

> > > > > > with the uncertainties we sometimes face.

> > > > > >

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

> > > > > > support and friendship for me. I am very grateful to have met

> > others

> > > > > > online

> > > > > > whose children also have this illness. Somehow, it makes things

a

> > > > > > little bit easier. Though we may be many miles apart and facing

> > > > different

> > > > > > stages and severities of illness, we do share a common bond.

It's

> > >nice

> > > > > > to be able to discuss things with others who understand what

> > we're

> > > > > > going through and who may have already been through the same

> > > > > > situations. I'm always looking around online for articles that

may

> >

> > >be

> > > > > > of interest to us, news about medicines, treatments, etc. I hope

> > to

> > >be

> > > > > > able

> > > > > > to share what I have learned and to continue learning. And I

hope

> > > > > > that you, too, will find it to be be a very positive and

friendly

> > > > > > experience.

> > > > > >

> > > > > >

> > > > > > Once again ... WELCOME!

> > > > > >

> > > > > > Hoping all is well with you and your families,

> > > > > > Georgina

> > > > >

> > > > > > Visit my homepage for a list of sites with info on childhood

> > > > arthritis:

> > > > > http://www.geocities.com/Heartland/Village/8414/

> > > >

> > > > > Visit my homepage for a list of sites with info on childhood

> > >arthritis:

> > > > http://www.geocities.com/Heartland/Village/8414/

> > >

> > >>Visit my homepage for a list of sites with info on childhood

arthritis:

> > >http://www.geocities.com/Heartland/Village/8414/

> >

> > > Visit my homepage for a list of sites with info on childhood

arthritis:

> > http://www.geocities.com/Heartland/Village/8414/

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

>

[Guest guest]

Hi Adrienne:

My daughter, Sara, has been on methotrexare for the past 20 months. She takes

5mg per week. Besides occasional hair loss we have not been experiencing any

other side effects (Thank God). Also, we go for blood work every six weeks to

monitor the function of the liver since it can cause liver damage. I should also

mention that she has a tendency to get colds a lot. Now that she is in

pre-school, she has a cold almost every two weeks!!!

I hope this helps....

[Guest guest]

Hello

I was on methatrexate for many years. When I started taking it they were

still in the trial periods for kids taking it. I was on it from 86 to 92. When

I was first on it I was on 7 1/2 mgs raising to 20 mgs up to about the 6 months

before I went off it. The last six months I was on a very high dosage and very

rare treatment of methatrexate. Infact I don't even think they use the high

dosage treatment. I was taking 750 mgs of Methatrexate IV Push. I finally went

off of it in 92 because it wasn't working and my liver functions where coming

up. I do believe the reason for the liver functions coming up was due to the

high dosage. While I was on it I didn't have anyother side affects that I

remember, and I remember pretty much everything that I have went threw since I

was dxed at 8.

My webpages:

http://fadedjeans.com/jraworld

http://www.bmi.net/acnelson

Reach me by ICQ. ICQ# 34033888

[ ] Welcome to onelist

> > > > >

> > > > > Hello,

> > > > >

> > > > > Welcome to the ! I am glad you found our list and

> > > > > I want to extend my warmest greetings. OneList.com certainly does

> > > > > make things very simple, even for those of us who don't have a lot

>

> >of

> > > > > computer experience. So jump right in, whenever you feel ready.

> You

> > > > > can introduce yourself, tell us about your child's medical

> history,

> > > ask

> > > > > any

> > > > > questions that you may have, add to the topic of discussion, or

> talk

> > > about

> > > > > whatever's on your mind. You can choose to write as much or as

> >little

> > > > > as you feel is appropriate. As often as you want. Some days

> there's

> > > lots

> > > > > of

> > > > > posts, other days it's pretty quiet.

> > > > >

> > > > > I hope you'll find this email list to be both informative and

> > > enjoyable.

> > > > > Everyone on the list either has or knows a child who has JRA. My

> > > interest

> > > > > in this topic began when my son, , was diagnosed with

> Systemic

> > > > > Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and

> > > > > caregivers, I believe it's important for us to learn as much as we

>

> >can

> > > > > about this illness. It's very helpful, in terms of understanding

> how

> > > our

> > > > > children are affected and in learning strategies for coping

> > > effectively

> > > > > with the uncertainties we sometimes face.

> > > > >

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

> > > > > support and friendship for me. I am very grateful to have met

> others

> > > > > online

> > > > > whose children also have this illness. Somehow, it makes things a

> > > > > little bit easier. Though we may be many miles apart and facing

> > > different

> > > > > stages and severities of illness, we do share a common bond. It's

> >nice

> > > > > to be able to discuss things with others who understand what

> we're

> > > > > going through and who may have already been through the same

> > > > > situations. I'm always looking around online for articles that may

>

> >be

> > > > > of interest to us, news about medicines, treatments, etc. I hope

> to

> >be

> > > > > able

> > > > > to share what I have learned and to continue learning. And I hope

> > > > > that you, too, will find it to be be a very positive and friendly

> > > > > experience.

> > > > >

> > > > >

> > > > > Once again ... WELCOME!

> > > > >

> > > > > Hoping all is well with you and your families,

> > > > > Georgina

> > > >

> > > > > Visit my homepage for a list of sites with info on childhood

> > > arthritis:

> > > > http://www.geocities.com/Heartland/Village/8414/

> > >

> > > > Visit my homepage for a list of sites with info on childhood

> >arthritis:

> > > http://www.geocities.com/Heartland/Village/8414/

> >

> >>Visit my homepage for a list of sites with info on childhood arthritis:

> >http://www.geocities.com/Heartland/Village/8414/

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

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

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

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

Click Here

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

[Guest guest]

In a message dated 10/29/99 11:45:46 PM Pacific Daylight Time,

aogilvie@... writes:

<< At the moment my daughter says she just feels sore everywhere and really

sick. >>

Yeah. there comes a point where you stop praying for the pain to lessen and

start with please just don't let me cry in front of someone.

cheers

Jenni

(using the list for catharsis again, but nobody ever seems to mind)

[Guest guest]

Hi

Thanks very much for your info. It seems you've come a long way, I hope

that you are well and feeling better. At the moment my daughter says she

just feels sore everywhere and really sick. But I only started the first

dose this week so I will have to keep a look out.

Thanks and go well.

Ady Ogilvie

M-Net Marketing

329 5118

fax 329 5167

aogilvie@...

> Re: [ ] Welcome to onelist

>

> Hello

> I was on methatrexate for many years. When I started taking it they

> were still in the trial periods for kids taking it. I was on it from 86

> to 92. When I was first on it I was on 7 1/2 mgs raising to 20 mgs up to

> about the 6 months before I went off it. The last six months I was on a

> very high dosage and very rare treatment of methatrexate. Infact I don't

> even think they use the high dosage treatment. I was taking 750 mgs of

> Methatrexate IV Push. I finally went off of it in 92 because it wasn't

> working and my liver functions where coming up. I do believe the reason

> for the liver functions coming up was due to the high dosage. While I was

> on it I didn't have anyother side affects that I remember, and I remember

> pretty much everything that I have went threw since I was dxed at 8.

>

> My webpages:

> <http://fadedjeans.com/jraworld>

> <http://www.bmi.net/acnelson>

> Reach me by ICQ. ICQ# 34033888

>

> [ ] Welcome to onelist

> > > > > >

> > > > > > Hello,

> > > > > >

> > > > > > Welcome to the ! I am glad you found our list and

> > > > > > I want to extend my warmest greetings. OneList.com

> certainly does

> > > > > > make things very simple, even for those of us who don't

> have a lot

> >

> > >of

> > > > > > computer experience. So jump right in, whenever you feel

> ready.

> > You

> > > > > > can introduce yourself, tell us about your child's medical

> > history,

> > > > ask

> > > > > > any

> > > > > > questions that you may have, add to the topic of

> discussion, or

> > talk

> > > > about

> > > > > > whatever's on your mind. You can choose to write as much

> or as

> > >little

> > > > > > as you feel is appropriate. As often as you want. Some

> days

> > there's

> > > > lots

> > > > > > of

> > > > > > posts, other days it's pretty quiet.

> > > > > >

> > > > > > I hope you'll find this email list to be both informative

> and

> > > > enjoyable.

> > > > > > Everyone on the list either has or knows a child who has

> JRA. My

> > > > interest

> > > > > > in this topic began when my son, , was diagnosed

> with

> > Systemic

> > > > > > Juvenile Rheumatoid Arthritis, back in May of 1995. As

> parents and

> > > > > > caregivers, I believe it's important for us to learn as

> much as we

> >

> > >can

> > > > > > about this illness. It's very helpful, in terms of

> understanding

> > how

> > > > our

> > > > > > children are affected and in learning strategies for

> coping

> > > > effectively

> > > > > > with the uncertainties we sometimes face.

> > > > > >

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

> information,

> > > > > > support and friendship for me. I am very grateful to have

> met

> > others

> > > > > > online

> > > > > > whose children also have this illness. Somehow, it makes

> things a

> > > > > > little bit easier. Though we may be many miles apart and

> facing

> > > > different

> > > > > > stages and severities of illness, we do share a common

> bond. It's

> > >nice

> > > > > > to be able to discuss things with others who understand

> what

> > we're

> > > > > > going through and who may have already been through the

> same

> > > > > > situations. I'm always looking around online for articles

> that may

> >

> > >be

> > > > > > of interest to us, news about medicines, treatments, etc.

> I hope

> > to

> > >be

> > > > > > able

> > > > > > to share what I have learned and to continue learning. And

> I hope

> > > > > > that you, too, will find it to be be a very positive and

> friendly

> > > > > > experience.

> > > > > >

> > > > > >

> > > > > > Once again ... WELCOME!

> > > > > >

> > > > > > Hoping all is well with you and your families,

> > > > > > Georgina

> > > > >

> > > > > > Visit my homepage for a list of sites with info on

> childhood

> > > > arthritis:

> > > > > http://www.geocities.com/Heartland/Village/8414/

> > > >

> > > > > Visit my homepage for a list of sites with info on childhood

> > >arthritis:

> > > > http://www.geocities.com/Heartland/Village/8414/

> > >

> > >>Visit my homepage for a list of sites with info on childhood

> arthritis:

> > >http://www.geocities.com/Heartland/Village/8414/

> >

> > > Visit my homepage for a list of sites with info on childhood

> arthritis:

> > http://www.geocities.com/Heartland/Village/8414/

>

>

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

> Visit my homepage for a list of sites with info on childhood

> arthritis:

> http://www.geocities.com/Heartland/Village/8414/

>

>

>

> _____

>

>

>

>

>

> Click Here

> <http://adforce.imgis.com/?adlink|2.0|2|94685|1788|1|ADFORCE;loc=300;>

>

>

> _____

>

>

>

>

[Guest guest]

Hi there Afsi

Thank you very much for your information, it was very helpfull. I will

certainly keep a look out and see.

Good luck and keep well

Ady Ogilvie

M-Net Marketing

329 5118

fax 329 5167

aogilvie@...

> RE: [ ] Welcome to onelist

>

> From: " Afsi Goodarzpoor " <afsi_goodarzpoor@...>

>

>

>

> Hi Adrienne:

>

> My daughter, Sara, has been on methotrexare for the past 20 months. She

> takes

> 5mg per week. Besides occasional hair loss we have not been experiencing

> any

> other side effects (Thank God). Also, we go for blood work every six weeks

> to

> monitor the function of the liver since it can cause liver damage. I

> should also

> mention that she has a tendency to get colds a lot. Now that she is in

> pre-school, she has a cold almost every two weeks!!!

> I hope this helps....

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Dear Ady,

I am also a recent addition to the JRA list (within the last month) and have

an 8 year old son, , who was just diagnosed with Poly JRA involving >20

joints on his hands and feet. Like you, we had seen a number of medical

specialists until the correct diagnosis was made, mostly because

continued to be extremely active and never complained of pain. Since July of

1999, he has had his first severe flare and is currently on methotrexate and

prednisone. My paternal aunt, who is currently 61 years old, has had the

diagnoses of JRA since age 14. Her symptoms and my sons are virtually

identical.

It is highly unlikely that more than one child in a family will get JRA.

Like you, I have been researching and researching and researching, and what I

have found is greatly conflicting information from many sources including

medical textbooks and the internet. What I have found to be the best

informational sources include our pediatric rheumatologist and this JRA list.

I have not posted here before this note, selecting to be a reader until I

was comfortable in communicating and sharing information. What I have found

is the most current information is found on this JRA list. Some of the

research that I did was obsolete even though only several years old and found

in rheumatology medical textbooks.

Although we all feel devastated when we find our child diagnosed with a

potentially life-long disease, we do live in a time of great medical

advancement in JRA. There are a number of very promising medications in the

pipeline that may benefit our children immensely. Please continue to have

hope.

Feyko

Feyko

Boca Raton, Florida

jfeyko@...

[Guest guest]

Hi Adrienne,

When Josh first started to have pain in his joints, I thought exactly

the same thing ... that it was growing pains. I didn't remember ever

experiencing anything like that when I was little but I figured that was

what it was all about. But then Josh started getting the raging fevers

at around the same time, so I knew there was something more to it.

Especially when the rash started shortly afterwards.

You must have been somewhat relieved when the bone marrow and other

tests ruled out other conditions. At least now you can focus on learning

more about the JRA. There is a very informative web site online by a Dr

Gotlieb who is based in South Africa. The site is very

comprehensive and includes a section on JRA/JCA. If you haven't visited

it yet, you may want to take a look. It's at:

http://www.arthritis.co.za/

Josh takes Methotrexate too and also needs to have regular monthly blood

tests done as well as regular visits at the eye doctor. Although his

arthritis hasn't affected his eyes, (some types do: uveitis) the meds he

takes ~specifically the prednisone~ have. We have to watch for any

growth of his steroid induced cataracts. MTX is also known to affect the

eyes but of only a very small proportion of people who take it. I think

about 1 to 2%. Very unlikely and that can be reversed by discontinuing

the MTX. They'll probably want to have baseline scores and follow up

regularly, two or three times a year. Uveitis is a concern though,

especially for children with the poly and pauci types. They may have

your daughter sit in front of a machine with a little clicker in her

hand and have her click the button each time she sees a red dot flash

by. They will probably also have her page through a book of dotted

patterns and let them know what shapes she sees. Josh enjoys these

tests. He does not like that they also need to put in several drops of

liquid to dilate his pupils. It irritates him and does make the eyes

more sensitive to light for a few hours, so maybe you should consider

bringing along a small pair of sunglasses. The paper and plastic ones

they provide seem to be made for adults and never fit well. Josh told me

that the last time he had an eye appt and went back to school

afterwards, his classmates thought he was just trying to act " cool " by

wearing his shades :-)

Stress has been known to trigger these sorts of illnesses but don't feel

guilty about maybe having caused it to happen with the proceedings going

on relating to the divorce. Your daughter may have been subjected to

lots more stress, if you continued in an unhappy partnership. And

sometimes this just seems to pop up out of the blue, with no known

outside stressors. Will her Dad remain a supportive partner in your

lives, as far as your daughter's illness is concerned? I know it can be

hard sometimes, as I'm a single parent too, but Josh's dad has remained

emotionally concerned and supportive because he knows Josh has a

difficult time of it every now and then and that helps us a lot. Still,

he has never educated himself about the illness to the extent that I

feel is important. And he is very easily influenced by what his friends

tell him, like how well copper bracelets cure arthritis! He is also a

big believer in alternative, homeopathic remedies. And was very

discouraged to learn that the several bottles of echinecia he bought to

help boost Josh's immune system couldn't be ingested, as it could defeat

the immune suppressing properties of the MTX and plaquinel Josh is on,

as we try to combat the still overactive immune system.

I hope the concerns you have over the financial aspects of 's care

will get easier over time. As if we don't already have enough things we

worry about! And I hope that the next doctor appt goes well. Let us

know, okay?

Take care,

Georgina

Adrienne Ogilvie wrote:

> Hi there

>

> is 6 1/2 now and the diagnosis came through this week, although we

> have suspected it for a while.

>

> For over two years I have taken her to various paediatricians and doctors,

> she's been diagnosed with everything from kidney problems to psoriasis. The

> silly thing is that she's been seen for the rash, or she's been seen for the

> temperatures. The joint pain was only ever in her knees and I assumed that

> was probably growing pains. No-one ever put all three together. Only in

> the last six months has she experienced joint pain elsewhere.

>

> Last Friday she had bone marrow tests to check for malignancies and other

> things, and finally her paediatrician referred us to one of the only Doctors

> in Johannesburg who know anything about Systemic Juvenile Chronic (as we

> call it this side of the ocean) Arthritis.

>

> Anyway, I have since spent a lot of time on the internet researching it and

> have found some excellent sites. She is on Methatrexate at the moment, anti

> - inflamatories and folic acid. I am starting her at the physiotherapist on

> Tuesday, who says she will see her for a while and teach me how I can help

> myself. She is also off to the opthalmologist next week to have a

> slit lamp test or something or other!

>

> I believe I also need to take her for liver tests to see how the medicine is

> affecting her and I guess I will just have to take it from here.

>

> I'm not really sure what I'm in for although it looks like a lot from what

> I've been reading. The poor kid has a hard few years ahead of her, and it

> could be a permanent thing too. She was very sad when I told her that all

> the aches and pains might not go away just like that, and I am wondering how

> to explain all the rest to her. I worry about what happens next year at

> school with learning to write and the problems in her wrists, also about

> sports if she wants to do sports. I'm worried for her about making friends,

> since I've been going through a divorce in the last six months I assumed she

> was emotionally finished which explained her lack of appetite and energy.

> She is a quiet little thing and it has affected her ability to make friends

> this year. Last year she used to tell me all the names of her little

> friends, this year she tends to fall asleep the moment she gets in the car.

>

> I also worry about the bills, and I am worried that she will feel different

> to the other kids at school. The only " good " thing about being told that it

> is a long term chronic illness is that you immediately accept the " finality "

> of it. You don't have to worry over two weeks of illness or three months,

> I've skipped right to the part where it is going to be a long time and that

> is the way that it is.

>

> I guess that is it. In the back of my head I worry about her little brother

> - he is only two, sometimes both kids in a family can get it I see.

>

> Medical Aid in this country is back to front, so I am going to have to stay

> in my job for a long while, if I ever have to change medical aids, they will

> put all sorts of loadings on me for 's arthritis if they don't exclude

> cover for her all together!

>

> It is quite overwhelming at the moment. I'm sure as time goes by I'll be

> able to see the top of it, but untill then I'm just going to have to hang in

> there I guess. It helps so much to read other stories, know that there are

> other parents and kids who have been through it and are going through it.

>

> Thanks!

>

> Ady Ogilvie

> > From: " Janet & Gilbert Moyer " <gjam@...>

> >

> > Hi Adrienne,

> >

> > Well, maybe you can start off by telling us about your child, with JRA. We

> > are always sending questions and answers to each other. If you have a

> > question, it will be seen by all of the members on the JRA list, and you

> > may

> > get a lot of responses that way. Also, when you are reading other letters

> > posted, you are more than welcome to respond. We always can use advice. My

> > daughter Mandy is 12. She has had JRA since she was about 18 months old.

> > WELCOME! Janet Moyer

[Guest guest]

Hi

Thanks for the words of support! It helps to know there are others out

there who go through the same thing. I find the exchange of information

very useful and sometimes a little scarey, there are some kids out there who

battle ten times more than my Meg, and that makes it scarey because I wonder

if she will get better or worse.

It's only her second week on the medication and although the Methatrexate

makes her feel sick, I don't see any other changes yet, am wondering if the

Relufin she is on is working or not. Anyway I'll hold out for a couple of

days and phone the doc then.

Thanks, go well and good luck!

Ady Ogilvie

M-Net Marketing

aogilvie@...

> Re: [ ] Welcome to onelist

>

> From: JFeyko@...

>

> Dear Ady,

>

> I am also a recent addition to the JRA list (within the last month) and

> have

> an 8 year old son, , who was just diagnosed with Poly JRA involving

> >20

> joints on his hands and feet. Like you, we had seen a number of medical

> specialists until the correct diagnosis was made, mostly because

> continued to be extremely active and never complained of pain. Since July

> of

> 1999, he has had his first severe flare and is currently on methotrexate

> and

> prednisone. My paternal aunt, who is currently 61 years old, has had the

> diagnoses of JRA since age 14. Her symptoms and my sons are virtually

> identical.

>

> It is highly unlikely that more than one child in a family will get JRA.

> Like you, I have been researching and researching and researching, and

> what I

> have found is greatly conflicting information from many sources including

> medical textbooks and the internet. What I have found to be the best

> informational sources include our pediatric rheumatologist and this JRA

> list.

> I have not posted here before this note, selecting to be a reader until I

>

> was comfortable in communicating and sharing information. What I have

> found

> is the most current information is found on this JRA list. Some of the

> research that I did was obsolete even though only several years old and

> found

> in rheumatology medical textbooks.

>

> Although we all feel devastated when we find our child diagnosed with a

> potentially life-long disease, we do live in a time of great medical

> advancement in JRA. There are a number of very promising medications in

> the

> pipeline that may benefit our children immensely. Please continue to have

>

> hope.

>

> Feyko

> Feyko

> Boca Raton, Florida

> jfeyko@...

>

>

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Georgina

Thanks for that, I have just visited the site and it is a good one! It

sounds as if they have a really good clinic based in Cape Town and am trying

to find out if there is anything like that here in Johannesburg as the

swimming thing sounds like a good bet. We went to the Opthalmologist on

Friday and so far Meggie's eyes have not been affected. So that leaves the

liver tests this month.

She is ok, just nauseous and sore in the mornings and evenings. I'm not

sure if her anti-inflamatories are working - do you know how long they

usually take? (She's been on Relufin for two weeks).

Her father is fairly supportive, although he doesn't understand very much

about the disease or the medicines, As a single mom it sometimes all gets a

bit much! It is very frustrating when you can't help your little one beyond

understanding and talking.

Her physiotherapist has also suggested some great exercises for her hands

which are proving fun. She has asked me to hang paper up on the wall so Meg

has to lift up her hands, and physically put her hands in paint and

" finger-hand " paint or paint with brushes, I can also play clapping games

with her to get her hands moving and hang balloons from the roof to get her

to push them out the way - good fun for little brother too! She doesn't

have to do these things, it is all gentle encouragement and if she gets

tired I usually let her be....

I was just wondering, in all the reams of reading I've been doing I've been

in contact with a dietician here in SA who recommends a gluten free diet -

together with flaxseed oil and Barley Greens to be taken each day. She says

fruit and nuts, as well as rice cakes, avocado, sugar free yoghurt,

ptoatoes, brown rice, polenta, mieleies (corn for you guys!), gluten free

pasta, fish and chicken are good food bets.

Do you know anything about diet? I know that diet usually doesn't have that

much to do with it, but I have been starting to hear that a gluten free diet

can help.

Have also come across some disturbing reports that the hepatitus injection

can possibly have something to do with this? Do you know if there is any

substance to that?

Anyway as you can see, I have a long way to go until I am as clued up as all

of you guys are! I'm glad I can ask questions and listen and read others

responses.

So, from one single mom to another good luck and keep smiling! Thanks for

the help. - By the way - how old is Josh?

Ady Ogilvie

M-Net Marketing

aogilvie@...

> Re: [ ] Welcome to onelist

>

> From: Georgina <gmckin@...>

>

>

> Hi Adrienne,

>

> When Josh first started to have pain in his joints, I thought exactly

> the same thing ... that it was growing pains. I didn't remember ever

> experiencing anything like that when I was little but I figured that was

> what it was all about. But then Josh started getting the raging fevers

> at around the same time, so I knew there was something more to it.

> Especially when the rash started shortly afterwards.

>

> You must have been somewhat relieved when the bone marrow and other

> tests ruled out other conditions. At least now you can focus on learning

> more about the JRA. There is a very informative web site online by a Dr

> Gotlieb who is based in South Africa. The site is very

> comprehensive and includes a section on JRA/JCA. If you haven't visited

> it yet, you may want to take a look. It's at:

> http://www.arthritis.co.za/

>

> Josh takes Methotrexate too and also needs to have regular monthly blood

> tests done as well as regular visits at the eye doctor. Although his

> arthritis hasn't affected his eyes, (some types do: uveitis) the meds he

> takes ~specifically the prednisone~ have. We have to watch for any

> growth of his steroid induced cataracts. MTX is also known to affect the

> eyes but of only a very small proportion of people who take it. I think

> about 1 to 2%. Very unlikely and that can be reversed by discontinuing

> the MTX. They'll probably want to have baseline scores and follow up

> regularly, two or three times a year. Uveitis is a concern though,

> especially for children with the poly and pauci types. They may have

> your daughter sit in front of a machine with a little clicker in her

> hand and have her click the button each time she sees a red dot flash

> by. They will probably also have her page through a book of dotted

> patterns and let them know what shapes she sees. Josh enjoys these

> tests. He does not like that they also need to put in several drops of

> liquid to dilate his pupils. It irritates him and does make the eyes

> more sensitive to light for a few hours, so maybe you should consider

> bringing along a small pair of sunglasses. The paper and plastic ones

> they provide seem to be made for adults and never fit well. Josh told me

> that the last time he had an eye appt and went back to school

> afterwards, his classmates thought he was just trying to act " cool " by

> wearing his shades :-)

>

> Stress has been known to trigger these sorts of illnesses but don't feel

> guilty about maybe having caused it to happen with the proceedings going

> on relating to the divorce. Your daughter may have been subjected to

> lots more stress, if you continued in an unhappy partnership. And

> sometimes this just seems to pop up out of the blue, with no known

> outside stressors. Will her Dad remain a supportive partner in your

> lives, as far as your daughter's illness is concerned? I know it can be

> hard sometimes, as I'm a single parent too, but Josh's dad has remained

> emotionally concerned and supportive because he knows Josh has a

> difficult time of it every now and then and that helps us a lot. Still,

> he has never educated himself about the illness to the extent that I

> feel is important. And he is very easily influenced by what his friends

> tell him, like how well copper bracelets cure arthritis! He is also a

> big believer in alternative, homeopathic remedies. And was very

> discouraged to learn that the several bottles of echinecia he bought to

> help boost Josh's immune system couldn't be ingested, as it could defeat

> the immune suppressing properties of the MTX and plaquinel Josh is on,

> as we try to combat the still overactive immune system.

>

> I hope the concerns you have over the financial aspects of 's care

> will get easier over time. As if we don't already have enough things we

> worry about! And I hope that the next doctor appt goes well. Let us

> know, okay?

>

> Take care,

> Georgina

>

> Adrienne Ogilvie wrote:

> > Hi there

> >

> > is 6 1/2 now and the diagnosis came through this week, although we

> > have suspected it for a while.

> >

> > For over two years I have taken her to various paediatricians and

> doctors,

> > she's been diagnosed with everything from kidney problems to psoriasis.

> The

> > silly thing is that she's been seen for the rash, or she's been seen for

> the

> > temperatures. The joint pain was only ever in her knees and I assumed

> that

> > was probably growing pains. No-one ever put all three together. Only

> in

> > the last six months has she experienced joint pain elsewhere.

> >

> > Last Friday she had bone marrow tests to check for malignancies and

> other

> > things, and finally her paediatrician referred us to one of the only

> Doctors

> > in Johannesburg who know anything about Systemic Juvenile Chronic (as we

> > call it this side of the ocean) Arthritis.

> >

> > Anyway, I have since spent a lot of time on the internet researching it

> and

> > have found some excellent sites. She is on Methatrexate at the moment,

> anti

> > - inflamatories and folic acid. I am starting her at the

> physiotherapist on

> > Tuesday, who says she will see her for a while and teach me how I can

> help

> > myself. She is also off to the opthalmologist next week to have a

> > slit lamp test or something or other!

> >

> > I believe I also need to take her for liver tests to see how the

> medicine is

> > affecting her and I guess I will just have to take it from here.

> >

> > I'm not really sure what I'm in for although it looks like a lot from

> what

> > I've been reading. The poor kid has a hard few years ahead of her, and

> it

> > could be a permanent thing too. She was very sad when I told her that

> all

> > the aches and pains might not go away just like that, and I am wondering

> how

> > to explain all the rest to her. I worry about what happens next year at

> > school with learning to write and the problems in her wrists, also about

> > sports if she wants to do sports. I'm worried for her about making

> friends,

> > since I've been going through a divorce in the last six months I assumed

> she

> > was emotionally finished which explained her lack of appetite and

> energy.

> > She is a quiet little thing and it has affected her ability to make

> friends

> > this year. Last year she used to tell me all the names of her little

> > friends, this year she tends to fall asleep the moment she gets in the

> car.

> >

> > I also worry about the bills, and I am worried that she will feel

> different

> > to the other kids at school. The only " good " thing about being told

> that it

> > is a long term chronic illness is that you immediately accept the

> " finality "

> > of it. You don't have to worry over two weeks of illness or three

> months,

> > I've skipped right to the part where it is going to be a long time and

> that

> > is the way that it is.

> >

> > I guess that is it. In the back of my head I worry about her little

> brother

> > - he is only two, sometimes both kids in a family can get it I see.

> >

> > Medical Aid in this country is back to front, so I am going to have to

> stay

> > in my job for a long while, if I ever have to change medical aids, they

> will

> > put all sorts of loadings on me for 's arthritis if they don't

> exclude

> > cover for her all together!

> >

> > It is quite overwhelming at the moment. I'm sure as time goes by I'll

> be

> > able to see the top of it, but untill then I'm just going to have to

> hang in

> > there I guess. It helps so much to read other stories, know that there

> are

> > other parents and kids who have been through it and are going through

> it.

> >

> > Thanks!

> >

> > Ady Ogilvie

>

> > > From: " Janet & Gilbert Moyer " <gjam@...>

> > >

> > > Hi Adrienne,

> > >

> > > Well, maybe you can start off by telling us about your child, with

> JRA. We

> > > are always sending questions and answers to each other. If you have a

> > > question, it will be seen by all of the members on the JRA list, and

> you

> > > may

> > > get a lot of responses that way. Also, when you are reading other

> letters

> > > posted, you are more than welcome to respond. We always can use

> advice. My

> > > daughter Mandy is 12. She has had JRA since she was about 18 months

> old.

> > > WELCOME! Janet Moyer

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hello Adrienne,

For my son Josh, personally, neither naprocyn or relafen provided enough

relief. Thank goodness there are several NSAID's available, so that when

one doesn't work well for a person, there are still other options to

experiment with. Josh has been taking indomethacin and it has worked

very well, except since this last flare up. He takes it with cytotec so

it doesn't bother his stomache. I recently asked if maybe we should

increase the dose. He's been taking 25mgs twice a day since he first

started it. But the doctor said that might be too much for his body

weight.

MTX may deplete the body's stores of folic acid so it is often advisable

to take 1mg of folic acid every day except the day the child takes MTX.

This often reduces unpleasant side effects like nausea, mouth sores and

some slight hair loss. Some people never get these sorts of side effects

at all. It did make Josh a little bit nauseous in the very beginning, so

we switched to giving it in the PM before bed, instead of in the morning

.... and that helped a lot. Afterwards, Josh seemed only to be a little

more tired than usual the next day. If Meg is feeling sick from it it

may be worth mentioning this to the doctors and seeing what they

suggest.

Also, I think it's fairly common for NSAID's to start to work way before

or at least within two weeks. Maybe the dose isn't quite high enough for

your daughter?

Hope this helps a little,

Georgina

[Guest guest]

Thanks - I'll keep you posted! All of a sudden this morning, she woke up

with hardly any aches and pains and no nausea - she was back to her little

self! So I'm holding thumbs to see what happens.

Go well...

Ady Ogilvie

M-Net Marketing

aogilvie@...

> Re: [ ] Welcome to onelist

>

> From: Georgina <gmckin@...>

>

> Hello Adrienne,

>

> For my son Josh, personally, neither naprocyn or relafen provided enough

> relief. Thank goodness there are several NSAID's available, so that when

> one doesn't work well for a person, there are still other options to

> experiment with. Josh has been taking indomethacin and it has worked

> very well, except since this last flare up. He takes it with cytotec so

> it doesn't bother his stomache. I recently asked if maybe we should

> increase the dose. He's been taking 25mgs twice a day since he first

> started it. But the doctor said that might be too much for his body

> weight.

>

> MTX may deplete the body's stores of folic acid so it is often advisable

> to take 1mg of folic acid every day except the day the child takes MTX.

> This often reduces unpleasant side effects like nausea, mouth sores and

> some slight hair loss. Some people never get these sorts of side effects

> at all. It did make Josh a little bit nauseous in the very beginning, so

> we switched to giving it in the PM before bed, instead of in the morning

> ... and that helped a lot. Afterwards, Josh seemed only to be a little

> more tired than usual the next day. If Meg is feeling sick from it it

> may be worth mentioning this to the doctors and seeing what they

> suggest.

>

> Also, I think it's fairly common for NSAID's to start to work way before

> or at least within two weeks. Maybe the dose isn't quite high enough for

> your daughter?

>

> Hope this helps a little,

> Georgina

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/