Re: Welcome to @onelist.com

[Guest guest]

Georgina (and everyone else)-

Hello everyone! My name is (but everyone calls me Jenn),and I'm a

junior in college. One of my neighbors has JRA-she's had it since she was

about seven-she's 14 now. She's gone through difficult times,but she's in a

kind of " remission " right now.

I also volunteered at Children's Hospital (New Orleans) when I was in high

school (for four summers),and met some children with JRA.

Once I get more of the " feel " of this list,I'll post more. I'm afraid that

I'll do more reading than actual posting for a while,since I don't have much

knowledge concerning JRA.

Jenn

[Guest guest]

Hi Jenn,

Welcome! That must have been an interesting experience, volunteering at the

Children's Hospital. If you don't mind my asking, what are you studying in

school? Maybe you're considering working in the field of medicine? I'm glad to

hear that your neighbor is currently in a remission. The teen years can be a

trying time, even without the effects of a chronic illness. I hope that she

stays well.

Feel free to stick around, read and join in whenever you want to :-)

If you're interested, you can also go to the onelist.com site, where you'll have

access to the archives. There, you can view an archive of all the

messages that have been posted since the list first began, about a month ago.

Isn't the internet great !?!

Hope You Have A Great Day!

Take Care,

Georgina

[Guest guest]

>From -return-ccleaver=hotmail.comonelist Tue Feb 23

07:35:24 1999

>Received: (qmail 4628 invoked by uid 99); 23 Feb 1999 15:22:28 -0000

>Date: 23 Feb 1999 15:22:28 -0000

>Message-ID: <919783348.4619onelist>

>ccleaver@...

>Subject: [ ] Welcome to onelist

>From: -owneronelist

>Reply-to: onelist

>

>Hello,

>

>Welcome to the ! I am glad that you found our new mailing 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.

>

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

enjoyable.

>Everyone on this 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 that 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 that we sometimes face.

>

>The internet has proven to be 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 everything 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 are

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

>situations. I am 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 also, 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

>

Dear Georgina,

Many thanks for including me onto you list. I believe it

is the first i have seen dealing with this as a childs complaint and i

welcome the involvement. M y son is 9 years old and was diagnosed with

JRA (Stills Disease) three years ago. During this time i have, as a

parent, been ploughing through the minefield of this terrible condition

with my son, learning as we go and from experience. I too have trailed

the libraries and the internet for information...i have learnt alot and

found out alot.....but with every change in my son`s condition, a new

problem is encountered....i don`t think i`ll ever get used to this!

`s JRA seemed to come out of no where....suddenly he was in

casualty one night with a horrendously swollen knee.......this was the

gateway to the long and painful road of hospitals, tests, medication,

pain and distress. The road, although familiar now, is by no means

smooth!

At the moment we are still trying to find a suitable line of medication

for jason, after several faliures. His condition is not stable at

present and has not been in remission reliably for some months now. I am

hoping that the doctor will hit on a drug more suited to him soon. The

worst thing as a parent with a child with JRA is the fact that it

renders you so helpless....you cannot take the pain away only make it

more bearable....so you have to be supportive and strong for your child

whilst underneath you are confused and bewildered by the vicious effects

JRA has on your child....

I am looking forward to hearing from other families in this

situation....to be able to discuss what our childern are going through

with someone who is experiencing the same has got to be good!

see you soon

carol

[Guest guest]

Hi Carol,

I'm very glad that you have found and joined us :-) My son Josh is nine

years old, too. Well, in April he'll be having a birthday so he's soon to be

10. He was diagnosed in May, 1995. Almost four years ago. I know what you

mean about encountering new problems along the way. Sometimes, when you

think you've finally gotten a handle on all of this and everything is

smoothe sailing, a new crisis appears. Or something you thought was a thing

of the past will suddenly reappear. Live and learn, though. And we do learn

a lot from our experiences and are better able to handle things that may

come up in the future.

Sometimes it does seem to take a long time before the doctors finally seem

to hit on the proper dosages and combinations of medications to lessen the

symptoms. I remember hearing about others who were doing really well while

on medication and wondering why my son was not among them. Eventually, he

did get to a medicated remission state. It didn't last too long once we

started working on decreasing meds, though. I think we have found out what

works for him, it's just a matter of fine tuning it all while trying to keep

him symptom free. But once again, this week something has happened and Josh

has not been feeling too well.

What sorts of medicines is taking now? What are his symptoms? Does he

have any joint damage at this point? I'll be looking forward to hearing from

you soon, Carol. And I'm sure you will free right at home with the other

members of this list. We have a really great group of people, here. So, any

questions or concerns or anything at all that you'd like to share, we're

here for you.

I've got to go now, to pick up my daughter from school but I'll send in an

update when we return from the rheumatologist tomorrow afternoon.

Take Care,

Georgina

[Guest guest]

Hello AJ,

Nice to see you again :-) Welcome to the !

If you go to the onelist.com site, you can access the group's archives list,

which includes a copy of all the messages that have been sent out since the

beginning. We are relatively new but already, a lot of good information has

been shared. I hope that you find some of it to be useful. Feel free to

contribute anything that you think might be helpful or important. I hope

that everyone here will feel comfortable enough to share any kind of

messages which might be relevent. I also like to send in news articles and

stories that I find online about arthritis treatments and concerns.

Anytime you have something to share, go right ahead.

Right now, though, I've got to start cooking dinner for my

hungry little ones. I'll be back tomorrow.

Josh is happily playing his Gameboy.

His fever, which was 104.4 this morning,

seems to have subsided. So, for the time being,

all is well over here :-)

Take Care,

Georgina

Ajaomom@... wrote:

> From: Ajaomom@...

>

> Hi guys, its me BHostAJ, with my other screen name. TTYL AJ

>

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

> Have you visited our new web site?

>

> Onelist: Helping to create Internet communities

[Guest guest]

MY daughter also has systemic JRA. She was diagnosed at 9 months and is 5 now,

she also takes mtx. sounds like we could have much to talk about :-) TTYL

n

[Guest guest]

Hi Georgina,

As I said in my first e-mail my daughter was diagnosed at age 2 with

Systemic JRA and has had a very difficult course with this disease. She

has had a multitude of drugs and in the last six months developed kidney

stones from the steroids. She has had 4 kidney stone attacks requiring

medical assistance for the pain. I'm not telling you this to frighten

others who have children with Systemic JRA but this is one of the side

affects of being on prolonged doses of steroids along with the many others

that cause problems for children. I have had 10 years + experience with

this disease and would be more than willing to share any of our experiences

with any of the people on your list.

I, like you, have also found the internet to be a great source of

information and support, as where we live we do not have a support group

for children with JRA. It is a disease that is least understood by most of

my daughter's friends and even adults who are involved in her daily care.

My daughter has not had any major surgerys to date, but is a candidate for

hip replacement in the not to distant future. My home province does not

have a Ped. Rheumatologist so all of our consultations are done through an

Adult Rheum. It is frustrating at times dealing with a Ped. who is really

very good and has been dealing with JRA for over 20 years, but 8 months ago

I took her to Sick Kids Hospital, in Toronto, where they put her on an

immune suppressant drug that he is unsure of, so whenever there is a

problem, the answer is not available immediately and he has to get the

answers from Sick Kids.

My daughter is on 2 immune suppressant drugs (Methotrexate and

Cyclosporine) along with Naprozen, Prednisone, Cytotec (Stomach Protector)

and she also takes Folic Acid. She has two disks fused in her neck, a

wrist that is sub-luxed and an ankle that is fusing. She has had multiple

joints injected, which has caused her to have high blood pressure and the

list goes on.

It is a daily struggle for her. She has had 2 remissions in 10+ years

which were 9 and 18 months in length. It was so wonderful to see her play

with her friends at that time, but friendships come and go, as when she

flares she has had big gaps from school.

It can be difficult as a parent or caregiver to see a child in so much

pain, but the day to day struggles become a part of your life.

Is there a chat forum that people on this list could avail of. If so,

please let me know. I use the ICQ Program and have had a number of people

inquire about JRA. It is a great forum to educate (or at least I hope so).

That you for reading my e-mail.

----------

> From: -owneronelist

> kacoady@...

> Subject: [ ] Welcome to onelist

> Date: Friday, March 12, 1999 12:04 AM

>

> Hello,

>

> Welcome to the ! I am glad that you found our new mailing 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.

>

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

> Everyone on this 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 that 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 that we sometimes face.

>

> The internet has proven to be 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 everything 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 are

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

> situations. I am 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 also, 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]

Hello ,

Never mind my question in the last note ... I now see that you're here with us,

at the list! Slowly but surely, I'm getting to all my mails! I'm wondering if

your daughter takes the methotrexate and cyclosporine orally or by injection?

Just curious. Josh, my son, takes the mtx orally - 12.5mgs per week.

You and Helge will have things to talk about. His daughter has also

had the side effect of developing painful kidney stones from the steroid use.

Also Oliver, whose son Damien has problems with his hips from this, as well.

Though he is much younger than your daughter, he has also had some problems

with high blood pressure, I think.

We also have no pediatric rheumatologists on the island where we live. We see

the regular pediatrician for most things and the pediatric rheumatologists fly

over here once a month for exams. When Josh is sick and we see the

pediatrician, he phones over to consult with the rheumy before making any

changes.

About the chat, will be able to help you better with that. It's something

I have never tried. hosts a chat through arthritisnet. He is an adult who

also had this as a child. I'm sure he'll let you know more about the chat

aspects, if you ask him.

Well, I am very glad that you have joined us and hopefully, we will all be able

to continue learning from one another's experiences. The internet really is a

great tool and resource for people like us :-)

Take Care,

Georgina

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Coady wrote:

> Hi Georgina,

>

> As I said in my first e-mail my daughter was diagnosed at age 2 with

> Systemic JRA and has had a very difficult course with this disease. She

> has had a multitude of drugs and in the last six months developed kidney

> stones from the steroids. She has had 4 kidney stone attacks requiring

> medical assistance for the pain. I'm not telling you this to frighten

> others who have children with Systemic JRA but this is one of the side

> affects of being on prolonged doses of steroids along with the many others

> that cause problems for children. I have had 10 years + experience with

> this disease and would be more than willing to share any of our experiences

> with any of the people on your list.

>

> I, like you, have also found the internet to be a great source of

> information and support, as where we live we do not have a support group

> for children with JRA. It is a disease that is least understood by most of

> my daughter's friends and even adults who are involved in her daily care.

>

> My daughter has not had any major surgerys to date, but is a candidate for

> hip replacement in the not to distant future. My home province does not

> have a Ped. Rheumatologist so all of our consultations are done through an

> Adult Rheum. It is frustrating at times dealing with a Ped. who is really

> very good and has been dealing with JRA for over 20 years, but 8 months ago

> I took her to Sick Kids Hospital, in Toronto, where they put her on an

> immune suppressant drug that he is unsure of, so whenever there is a

> problem, the answer is not available immediately and he has to get the

> answers from Sick Kids.

>

> My daughter is on 2 immune suppressant drugs (Methotrexate and

> Cyclosporine) along with Naprozen, Prednisone, Cytotec (Stomach Protector)

> and she also takes Folic Acid. She has two disks fused in her neck, a

> wrist that is sub-luxed and an ankle that is fusing. She has had multiple

> joints injected, which has caused her to have high blood pressure and the

> list goes on.

>

> It is a daily struggle for her. She has had 2 remissions in 10+ years

> which were 9 and 18 months in length. It was so wonderful to see her play

> with her friends at that time, but friendships come and go, as when she

> flares she has had big gaps from school.

>

> It can be difficult as a parent or caregiver to see a child in so much

> pain, but the day to day struggles become a part of your life.

>

> Is there a chat forum that people on this list could avail of. If so,

> please let me know. I use the ICQ Program and have had a number of people

> inquire about JRA. It is a great forum to educate (or at least I hope so).

>

> That you for reading my e-mail.

>

>

[Guest guest]

Georgina,

My daughter Leigh-Ann, first started taking the metho by mouth, switched to

injection for a number of years, to get the full effects, and was switched

back to mouth when the cyclosporine came on board. She takes 10 mgs once a

week of metho and 75mgs of cyclo each day. The metho worked well for a

number of years suppressing the systemic but after many increases the metho

just stopped working, thus Toronto Sick Kids implemented the Cyclosporine

and she now takes each drug by mouth. Leigh-Ann also takes folic acid, but

not on metho day. She only takes 1 mg. and right now 1 mg of prednisone,

1/2 a 375 mg tab of naproxen and 100 mg of cytotec. She had both her knees

injected this week and has had some success with regaining flexion in her

knees.

Leigh-Ann has no problems with mouth sores (we've been very lucky in that

respect) but one of the other parents mentioned about problems with teeth.

My daughter also has overcrowding in her mouth, attributed to the

arthritis. She has to go back to the orthodontist and get teeth removed

and an expanding retainer put in to correct the overcrowding.

I also received a message from and will get back to him about the

chat.

This is a wonderful place to learn new things and help others.

Talk to you soon,

----------

> From: Georgina <gmckin@...>

> onelist

> Subject: [ ] Re: Welcome to onelist

> Date: Sunday, March 14, 1999 6:59 AM

>

> From: Georgina <gmckin@...>

>

> Hello ,

>

> Never mind my question in the last note ... I now see that you're here

with us,

> at the list! Slowly but surely, I'm getting to all my mails! I'm

wondering if

> your daughter takes the methotrexate and cyclosporine orally or by

injection?

> Just curious. Josh, my son, takes the mtx orally - 12.5mgs per week.

>

> You and Helge will have things to talk about. His daughter has

also

> had the side effect of developing painful kidney stones from the steroid

use.

> Also Oliver, whose son Damien has problems with his hips from this, as

well.

> Though he is much younger than your daughter, he has also had some

problems

> with high blood pressure, I think.

>

> We also have no pediatric rheumatologists on the island where we live. We

see

> the regular pediatrician for most things and the pediatric

rheumatologists fly

> over here once a month for exams. When Josh is sick and we see the

> pediatrician, he phones over to consult with the rheumy before making any

> changes.

>

> About the chat, will be able to help you better with that. It's

something

> I have never tried. hosts a chat through arthritisnet. He is an

adult who

> also had this as a child. I'm sure he'll let you know more about the chat

> aspects, if you ask him.

>

> Well, I am very glad that you have joined us and hopefully, we will all

be able

> to continue learning from one another's experiences. The internet really

is a

> great tool and resource for people like us :-)

>

> Take Care,

> Georgina

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Coady wrote:

>

> > Hi Georgina,

> >

> > As I said in my first e-mail my daughter was diagnosed at age 2 with

> > Systemic JRA and has had a very difficult course with this disease.

She

> > has had a multitude of drugs and in the last six months developed

kidney

> > stones from the steroids. She has had 4 kidney stone attacks requiring

> > medical assistance for the pain. I'm not telling you this to frighten

> > others who have children with Systemic JRA but this is one of the side

> > affects of being on prolonged doses of steroids along with the many

others

> > that cause problems for children. I have had 10 years + experience

with

> > this disease and would be more than willing to share any of our

experiences

> > with any of the people on your list.

> >

> > I, like you, have also found the internet to be a great source of

> > information and support, as where we live we do not have a support

group

> > for children with JRA. It is a disease that is least understood by most

of

> > my daughter's friends and even adults who are involved in her daily

care.

> >

> > My daughter has not had any major surgerys to date, but is a candidate

for

> > hip replacement in the not to distant future. My home province does

not

> > have a Ped. Rheumatologist so all of our consultations are done through

an

> > Adult Rheum. It is frustrating at times dealing with a Ped. who is

really

> > very good and has been dealing with JRA for over 20 years, but 8 months

ago

> > I took her to Sick Kids Hospital, in Toronto, where they put her on an

> > immune suppressant drug that he is unsure of, so whenever there is a

> > problem, the answer is not available immediately and he has to get the

> > answers from Sick Kids.

> >

> > My daughter is on 2 immune suppressant drugs (Methotrexate and

> > Cyclosporine) along with Naprozen, Prednisone, Cytotec (Stomach

Protector)

> > and she also takes Folic Acid. She has two disks fused in her neck, a

> > wrist that is sub-luxed and an ankle that is fusing. She has had

multiple

> > joints injected, which has caused her to have high blood pressure and

the

> > list goes on.

> >

> > It is a daily struggle for her. She has had 2 remissions in 10+ years

> > which were 9 and 18 months in length. It was so wonderful to see her

play

> > with her friends at that time, but friendships come and go, as when she

> > flares she has had big gaps from school.

> >

> > It can be difficult as a parent or caregiver to see a child in so much

> > pain, but the day to day struggles become a part of your life.

> >

> > Is there a chat forum that people on this list could avail of. If so,

> > please let me know. I use the ICQ Program and have had a number of

people

> > inquire about JRA. It is a great forum to educate (or at least I hope

so).

> >

> > That you for reading my e-mail.

> >

> >

>

>

>

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

> Ideas on how we can improve ONElist?

>

> Check out the Suggestion Box feature on our new web site

[Guest guest]

Hi ,

You know, when we see the rheumatologist next time, if he talks about the IV

pulse therapy with cytoxin maybe I'll ask him, instead, about possibly using

cyclosporine first. I want to see what he thinks about that. It sounds like

another good option. I'm really hoping we can just leave everything alone, the

way it is right now but if he needs something different I'd be much more

willing to try that, instead. Thank you for mentioning it.

How long had your daughter had jra before she needed injections into her

joints? Did it happen early on or was it something that came years later? So

far, Josh's joints are still pretty good. And he's had this almost four years,

now. He has some troubled spots but for the most part, they're in good shape.

At least for the time being.

It was me who had the question about overcrowding of teeth. Last week Josh had

two baby teeth pulled because his permanent teeth were already coming through

and the smaller ones wouldn't budge. Today, he lost another loose tooth, the

natural way. He was showing me the space left behind from one of the pulled

teeth and was asking me if I thought it was big enough for a big tooth to fit

into. I really don't know. He doesn't seem to think so. I guess we'll just have

to wait and see and keep watching it. He's going back in this week, Thursday I

think, for a cleaning and check up. I'll mention our concerns again, to the

dentist, and see if there's anything we should be doing right now. Maybe ask

about the expanding retainers. I never knew of such a thing. Is it permanently

attached to the teeth or is it somethin worn only periodically, like at night?

Was it your dentist or your rheumatolgist who first noticed and mentioned the

overcrowding?

Oh, there are still so many questions!

Thanks for sharing your story,

Georgina

Coady wrote:

> From: " Coady " <kacoady@...>

>

> Georgina,

>

> My daughter Leigh-Ann, first started taking the metho by mouth, switched to

> injection for a number of years, to get the full effects, and was switched

> back to mouth when the cyclosporine came on board. She takes 10 mgs once a

> week of metho and 75mgs of cyclo each day. The metho worked well for a

> number of years suppressing the systemic but after many increases the metho

> just stopped working, thus Toronto Sick Kids implemented the Cyclosporine

> and she now takes each drug by mouth. Leigh-Ann also takes folic acid, but

> not on metho day. She only takes 1 mg. and right now 1 mg of prednisone,

> 1/2 a 375 mg tab of naproxen and 100 mg of cytotec. She had both her knees

> injected this week and has had some success with regaining flexion in her

> knees.

>

> Leigh-Ann has no problems with mouth sores (we've been very lucky in that

> respect) but one of the other parents mentioned about problems with teeth.

> My daughter also has overcrowding in her mouth, attributed to the

> arthritis. She has to go back to the orthodontist and get teeth removed

> and an expanding retainer put in to correct the overcrowding.

>

> I also received a message from and will get back to him about the

> chat.

>

> This is a wonderful place to learn new things and help others.

> Talk to you soon,

>

[Guest guest]

WE are reducing at least that slowly. She went from 3mg to 2 mg, and then to

1, and now at 1 everyother day, for 2 weeks then done completely. I hate

worrying about the post pred flare :-( ttyl, n

[Guest guest]

Georgina,

Leigh-Ann had been diagnosed and had active arthritis for approx. 6 years

before the joint injections started. The expanding retainer is not a

permanent appliance. She would probably wear it for 2 years (more or less)

and it would be worn all the time and it was our family dentist who

referred her to the orthodontist.

Don't worry about asking questions, I'm only to happy to be able to help

others. I had no one to ask and through our experiences, it has made the

coping easier.

I just wanted to add to all the parents who are reducing Pred. this

question " At what rate is the Pred being reduced and by how much? "

The reason I'm asking is that the Rheum. told us the best way to reduce was

1 mg per month, any faster than this the child usually flares (or craves)

the loss of the dose.

----------

> From: Georgina <gmckin@...>

> onelist

> Subject: [ ] Re: Welcome to onelist

> Date: Monday, March 15, 1999 8:45 AM

>

> From: Georgina <gmckin@...>

>

> Hi ,

>

> You know, when we see the rheumatologist next time, if he talks about the

IV

> pulse therapy with cytoxin maybe I'll ask him, instead, about possibly

using

> cyclosporine first. I want to see what he thinks about that. It sounds

like

> another good option. I'm really hoping we can just leave everything

alone, the

> way it is right now but if he needs something different I'd be much more

> willing to try that, instead. Thank you for mentioning it.

>

> How long had your daughter had jra before she needed injections into her

> joints? Did it happen early on or was it something that came years later?

So

> far, Josh's joints are still pretty good. And he's had this almost four

years,

> now. He has some troubled spots but for the most part, they're in good

shape.

> At least for the time being.

>

> It was me who had the question about overcrowding of teeth. Last week

Josh had

> two baby teeth pulled because his permanent teeth were already coming

through

> and the smaller ones wouldn't budge. Today, he lost another loose tooth,

the

> natural way. He was showing me the space left behind from one of the

pulled

> teeth and was asking me if I thought it was big enough for a big tooth to

fit

> into. I really don't know. He doesn't seem to think so. I guess we'll

just have

> to wait and see and keep watching it. He's going back in this week,

Thursday I

> think, for a cleaning and check up. I'll mention our concerns again, to

the

> dentist, and see if there's anything we should be doing right now. Maybe

ask

> about the expanding retainers. I never knew of such a thing. Is it

permanently

> attached to the teeth or is it somethin worn only periodically, like at

night?

> Was it your dentist or your rheumatolgist who first noticed and mentioned

the

> overcrowding?

>

> Oh, there are still so many questions!

> Thanks for sharing your story,

> Georgina

>

> Coady wrote:

>

> > From: " Coady " <kacoady@...>

> >

> > Georgina,

> >

> > My daughter Leigh-Ann, first started taking the metho by mouth,

switched to

> > injection for a number of years, to get the full effects, and was

switched

> > back to mouth when the cyclosporine came on board. She takes 10 mgs

once a

> > week of metho and 75mgs of cyclo each day. The metho worked well for a

> > number of years suppressing the systemic but after many increases the

metho

> > just stopped working, thus Toronto Sick Kids implemented the

Cyclosporine

> > and she now takes each drug by mouth. Leigh-Ann also takes folic acid,

but

> > not on metho day. She only takes 1 mg. and right now 1 mg of

prednisone,

> > 1/2 a 375 mg tab of naproxen and 100 mg of cytotec. She had both her

knees

> > injected this week and has had some success with regaining flexion in

her

> > knees.

> >

> > Leigh-Ann has no problems with mouth sores (we've been very lucky in

that

> > respect) but one of the other parents mentioned about problems with

teeth.

> > My daughter also has overcrowding in her mouth, attributed to the

> > arthritis. She has to go back to the orthodontist and get teeth

removed

> > and an expanding retainer put in to correct the overcrowding.

> >

> > I also received a message from and will get back to him about the

> > chat.

> >

> > This is a wonderful place to learn new things and help others.

> > Talk to you soon,

> >

>

>

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

> If you like orange and blue, then you will love our new web site!

>

> Onelist: ing connections and information exchange

[Guest guest]

Thank you for the warm welcome. I feel like I got a big hug! I'm still in

the stage where everything makes me cry and I have to keep putting off

crying until it's convenient. My 12 year old son wa s diagnosed last

spring with JRA right in the middle of baseball season. He went from being

the catcher to score keeper. He is not a very happy person to start with

and this disease has made him unbearable. He doesn't want sympathy or

anyone oitside the family to know what's wrong. He doesn't want to go to

school when he's in a flare because he can't take gym or writ or even carry

his books from one class to another. also has severe allergies and

the arthritis symptoms are accompanied by severe hives all over his body.

He often has chills and fever at night and some times collapses. It's very

scary for all of us. So far the doctors have only used prednisone which I

am scared of and this time it isn't working. We are considering going to a

big medical center in a major city, any suggestions? We are from

Cobleskill, a small rural town 50m west of Albany NY. I also have two

other children who are demanding attention ages 7 and 14 and I just don't

have the stamina to keep up with sick and well kids!! I need some heavy

duty words of wisdom and practical advice. I look forward to hearing from

my new " friends " on this list. Thanks in advance,

lvascho@...

----------

> From: -owneronelist

> lvascho@...

> Subject: [ ] Welcome to onelist

> Date: Monday, April 05, 1999 10:19 AM

>

> Hello,

>

> Welcome to the ! I am glad that you found our new mailing 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.

>

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

> Everyone on this 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 that 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 that we sometimes face.

>

> The internet has proven to be 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 everything 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 are

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

> situations. I am 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 also, 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 ,

I'm glad you found us and hope you'll feel right at home. Any time you have any

questions, or if you just feel like venting a little, go right ahead. The

people here are very friendly and very helpful :-) I'll have to second what

said. I think it's a good idea to visit a major medical center and see

what their pediatric rheumatologists have to say. If they come up with a

different treatment plan, your son's regular doctor will most likely cooperate,

as far as writing out the prescriptions and stuff. That's sort of what we do.

We live on Maui, where there are NO pediatric rheumatologists. They are based

in Oahu and fly over once a month to see the children here. Our regular

pediatrician consults with them by phone or computer, when we need to see him

for anything. I usually ask that the results of blood tests and xrays be sent

to both, so they both know what's going on. It's been working pretty well, for

us.

This can be a difficult diagnosis for all. All members of the family are

affected, when a child becomes ill. It can get very stressful sometimes.

Especially at 's age, when fitting in with peers is so very important to

them. And you say that he was active in sports, too. He must really be

questioning his abilities and wondering about his body's responses. It does

effect one's emotions too, as well as the physical body. Some of the

medications are known to cause mood swings. Prednisone sometimes does that to

my son, Josh. Depending on the dose.

My son just missed a whole lot of school. Not because he didn't want to go but

because he was too ill to go. He had a major flare that lasted about 6 weeks.

High fevers, inflammation, bad joint pain, lots of fatigue, and eventually

pneumonia. He just went back last week. That takes readjusting, too. Sometimes

when he's not doing well, he can't take gym class. He also has a hard time

carrying heavy books, so we have an extra set here at home now, so he doesn't

need to bring them back and forth. Sometimes he goes in a little later, if he

has high fever and lots of morning stiffness. The school has been very

cooperative with us. In fact, we're having the annual meeting this afternoon to

go over his case, again.

So, I really shouldn't be staying online for long :-) Just wanted to say hello

and welcome you to our group. I'll write more next time. It can take time to

adapt to a chronic illness. I hope it will be a little bit easier for you, now

that you know we're out here, and going throught the same kinds of issues. A

few of us, like me (my daughter Kayla is 8) also have other children who aren't

sick. I know what you mean! Sometimes the scheduling of activities can get

rough! Like this past weekend! Yikes! I'll have to tell you more about that in

my next note, too :-)

Anyway, it's Josh's birthday and I've got some things to pick up, so I'm off

into the wild blue yonder. I'll be back. When the kids go to sleep tonite, I'll

post some more.

Take care,

Georgina

> From: " LVA - Schoharie County, Inc. " <lvascho@...>

>

> Thank you for the warm welcome. I feel like I got a big hug! I'm still in

> the stage where everything makes me cry and I have to keep putting off

> crying until it's convenient. My 12 year old son wa s diagnosed last

> spring with JRA right in the middle of baseball season. He went from being

> the catcher to score keeper. He is not a very happy person to start with

> and this disease has made him unbearable. He doesn't want sympathy or

> anyone oitside the family to know what's wrong. He doesn't want to go to

> school when he's in a flare because he can't take gym or writ or even carry

> his books from one class to another. also has severe allergies and

> the arthritis symptoms are accompanied by severe hives all over his body.

> He often has chills and fever at night and some times collapses. It's very

> scary for all of us. So far the doctors have only used prednisone which I

> am scared of and this time it isn't working. We are considering going to a

> big medical center in a major city, any suggestions? We are from

> Cobleskill, a small rural town 50m west of Albany NY. I also have two

> other children who are demanding attention ages 7 and 14 and I just don't

> have the stamina to keep up with sick and well kids!! I need some heavy

> duty words of wisdom and practical advice. I look forward to hearing from

> my new " friends " on this list. Thanks in advance,

>

> lvascho@...

[Guest guest]

Hey Georgina and all,

I made it. I guess the last time I signed up I didn't confirm the email thing.

where are you from in NJ? My husband is from NJ, his mother lives in

Milleville, is that close to you?

I'm 's mother. She's had Stills for 2 years now. She's doing fairly

well,

no major flares since her initial one. She's on mtx, naproxyn, zantac, and

folic

acid. Anybody have any ideas on how to get her to take a pill? She has an

awful

time. I did too when I was a kid and still have a time taking pills. So I'm

wondering about that. She's 8 years old.

Well, that's a short history. Thanks, Georgina, for reminding me again about

the

list. I wish I would've done it right the first time!

Tracey

-owneronelist wrote:

> Hello,

>

> Welcome to the ! I am glad that you found our new mailing 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.

>

>

>

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

>

> Everyone on this 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 that 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 that we sometimes face.

>

> The internet has proven to be 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 everything 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 are

>

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

>

> situations. I am 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 also, 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 Tracey,

Great to have you on board! I think you'll like this list. Plenty of friendly

people

here. Oh, at one time someone mentioned that the way their child takes a pill is

by

squishing it inside one of those small colored and flavored mini marshmallows.

What

an ingenious idea! Wish I could rememebr right now, who should be credited with

this

idea! Josh, fortunately, has had no problems with swallowing pills. He much

prefers a

pill to any liquid medicine. He started taking them daily at age six. My

sister's

husband, a big strong guy, 6 feet 4, needs to have his pills crushed or else he

fusses like a baby needing to swallow one whole! I guess it's an individual

matter

:-)

Well Tracey, I'm happy you've found us!

Take care,

Georgina

> From: Tracey Herzog <americk@...>

>

> Hey Georgina and all,

> I made it. I guess the last time I signed up I didn't confirm the email

thing.

> where are you from in NJ? My husband is from NJ, his mother lives in

> Milleville, is that close to you?

>

> I'm 's mother. She's had Stills for 2 years now. She's doing fairly

well,

> no major flares since her initial one. She's on mtx, naproxyn, zantac, and

folic

> acid. Anybody have any ideas on how to get her to take a pill? She has an

awful

> time. I did too when I was a kid and still have a time taking pills. So I'm

> wondering about that. She's 8 years old.

>

> Well, that's a short history. Thanks, Georgina, for reminding me again about

the

> list. I wish I would've done it right the first time!

> Tracey

[Guest guest]

has to take the folic acid in a pill and guess what? She CHEWS it and

says it

tastes like animal crackers! LOL

Tracey

Georgina wrote:

> From: Georgina <gmckin@...>

>

> Hi Tracey,

>

> Great to have you on board! I think you'll like this list. Plenty of friendly

people

> here. Oh, at one time someone mentioned that the way their child takes a pill

is by

> squishing it inside one of those small colored and flavored mini marshmallows.

What

> an ingenious idea! Wish I could rememebr right now, who should be credited

with this

> idea! Josh, fortunately, has had no problems with swallowing pills. He much

prefers a

> pill to any liquid medicine. He started taking them daily at age six. My

sister's

> husband, a big strong guy, 6 feet 4, needs to have his pills crushed or else

he

> fusses like a baby needing to swallow one whole! I guess it's an individual

matter

> :-)

>

> Well Tracey, I'm happy you've found us!

> Take care,

> Georgina

>

> > From: Tracey Herzog <americk@...>

> >

> > Hey Georgina and all,

> > I made it. I guess the last time I signed up I didn't confirm the email

thing.

> > where are you from in NJ? My husband is from NJ, his mother lives in

> > Milleville, is that close to you?

> >

> > I'm 's mother. She's had Stills for 2 years now. She's doing fairly

well,

> > no major flares since her initial one. She's on mtx, naproxyn, zantac, and

folic

> > acid. Anybody have any ideas on how to get her to take a pill? She has an

awful

> > time. I did too when I was a kid and still have a time taking pills. So

I'm

> > wondering about that. She's 8 years old.

> >

> > Well, that's a short history. Thanks, Georgina, for reminding me again

about the

> > list. I wish I would've done it right the first time!

> > Tracey

>

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

> shop.theglobe.com * One Stop Shopping * Free Shipping in the U.S.!

> Live Personal Shopper * Satisfaction Guaranteed * No Hassle Returns!

> Accessories, Apparel, Gourmet, Jewelry, Kids, Outdoors, Sports, More!

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[Guest guest]

Just thought I'd jump in here - Heard somewhere to have the kids practice

taking pills with m & m's that way, if they get stuck, they'll melt - i guess?

Anyway, Zachary is still too young for pills but I'm sure we'll try all the

tricks when he gets there!

-Suzie

[Guest guest]

Good idea suzie, they even have those smaller m & m minis, those are about the

size of the methotrexate and the pred. How old is your son?? TTYL n

[Guest guest]

How do I go about posting a message?

[Guest guest]

Hello ,

Skis@... wrote:

> How do I go about posting a message?

You just did :-) Welcome to the list! Feel free to post, ask questions, or

just read what others share.

I'm glad that you have joined us here. I hope that is doing alright.

Please let us know, when you have a chance.

Take care,

Georgina

[Guest guest]

Hello Georgina:

I am new to this list. Is this list for kids with only the systemic type of JRA

or other types (such as poly or pauci articular) can subscribe to this list.

Please advise. I want to make sure I am in the right place since I am not

dealing with the systemic type. Thank you very much...

[Guest guest]

came out of hospital on May 24th with a sed rate of 70 and a white

blood count of 2100. Today was the first normal day we have had in 5 weeks.

When we went to the Doctor today they could find nothing clinically wrong!

Her movement has been so good the last few days that she has even been

trimming her toe nails with her teeth!!! No steroid for a month and she will

stay on Indocin at 3cc X times daily and we'll just see what happens. Next

month they will read her levels and see if she has gone down during the month

on Indocin or not. Apparently the blood levels can lag the clinical symptoms

by several weeks. If there's no change in the next month then Methatrexate is

a possible. The doc said this is a honey moon period most likely.

[Guest guest]

Hi ,

I was so happy to read your recent message and hear that is feeling well.

You must all be feeling very relieved. Has she not had any prednisone for one

month already or has she just now stopped taking it? , my son, takes

indomethacin (25mgs in the morning and evening time), too. It helps a lot to

reduce the pain, inflammation and fevers. Yes, we've seen that sometimes there

is

a difference in how the child is feeling versus the numbers on the blood test

results.

We knew a little girl who suddenly came down with the same symptoms as my son.

This family lived very close by to us. I was so shocked when her mom was

describing what was happening. It sounded so familiar. Then, after being treated

with prednisone and indomethacin for just 5 months, she experienced a complete

remission. Weaned off the prednisone quite easily. And then, the NSAID too. Even

though the onset was very severe for her. They have since moved away, so we

haven't been in touch lately. But I haven't seen them at the rheumatologists

either, so I imagine she is still well. This is such a mysterious illness......

I

hope that this current trend continues and that remains pain and symptom

free. Maybe everything is all under control, at least for now.

Thanks for writing,

Georgina

[Guest guest]

Hello Afsi,

Yes, we are mainly parents of children with the systemic type of JRA. Still,

quite

often when we find interesting news and research articles to share with the

group,

they are more general in nature and scope, covering all aspects of JRA. Our

children, it seems, have the regular arthritic symptoms that you are probably

familiar with and what makes it different is that they also have the fevers,

rash

and sometimes organ involvement. Sometimes after the initial systemic onset,

those

features subside and the child is reclassified as pauci or poly articular, with

systemic onset. So, I think that this still may be a good place for you. Why not

stick around for a while and see what you think? And tell us a little about your

experience.

Aloha,

Georgina

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

>

> Hello Georgina:

>

> I am new to this list. Is this list for kids with only the systemic type of

JRA

> or other types (such as poly or pauci articular) can subscribe to this list.

> Please advise. I want to make sure I am in the right place since I am not

> dealing with the systemic type. Thank you very much...