RE: Hi. New to list

July 8, 2001

hi Lorie and Liberty, My name is Lora and my 7 year old daughter has

had symptoms since age 3, but only diagnosed 2 years ago. She has systemic

JRA ( affecting not only joints, but other organs as well) I have gotten some

helpful information from our local chapter of the arthritis foundation. We

live in northeastern Ohio. There is a camp in Ohio, I believe its near

cincinati called camp wekandu. I will be sending next year. It is

usually the second week in July. I'm sorry to hear the meds are not giving

her any relief right now. What is she taking? What are her other symptoms? I

also recently have seen my daughter get worse with joint disease. She usually

got worse in the fall , so for her to be bad this time of year is unusual.

Hope to hear back from you, take care and I'm glad you found this site, it

has helped me so much. Lora

July 8, 2001

Lorie..hello my name is and my heart goes out to you and your

family...My daughter Tabitha was diagnosed at the age four with polyarticular

jra...she is now sixteen. Tabitha is going to camp this year for the first

time...never knew there was a camp until last year. She is also excited. I

hope you do get a chance to meet children her age with jra. I have met a

couple of children but not many. If you contact your local Arthritis

foundation they have information on the jra. Plus finding this website is a

blessing..i just found it this year..didn't have a computer before. The meds

will probably take awhile to kick in. I honestly couldn't tell you what

works with Tabitha and what doesn't. I do know she has been on Remicade and

it seems to be working real well...but we got lucky the only side effect she

had was on indocin when she was five so they put her on naporsyn. She has had

both knees replaced and both hips replaced. Tabitha has had a long journey to

go through since the age four and plus a long one ahead of her..the only

thing I can tell you is that Tabitha has one heck of an attitude to go along

with disease...Hang in there and give your little one a hug from Tabitha and

I..good luck!

and Tabitha

July 8, 2001

Hi, My name is Lorie. I am introducing myself and my dd. Also wondering

about JRA camps. How often do they have it, I suppose it is probably once a

year. Maybe we could find a camp for next year. What ages do they take?

My daughter Liberty will be 4 in a couple of weeks. She was diagnosed with

JRA around 6 months ago. I am not sure yet what form of it she has as it

just keeps getting worse and affecting more joints, and I don't really

understand the classifications. We were worried about the eye problems until

recently her dr. told us that she has been placed in a class of a more

severe form of the disease and the ONLY good thing about that was the

lowered risk for eye disease. I guess that is a good thing. Her good days

are getting further apart and no meds have so far accomplished much.

I am in search of other parents with children of the same age who have JRA.

It would be nice to even someday meet with some other children in our area

that Liberty could talk to and play with. I am also interested in getting as

much info about JRA as possible so that maybe I can understand what to

expect. I am glad to have found a group like this. Hopefully we will be in

touch.

Lorie

recentlty dx jra

Dear friends,

My name is MAry, my daughter is 7 and recently was dx with

Jra. What a day that was. I think I cried for hours. I thought

it was my fault. has her good and bad days, but latley

it seems good days are far in between. She has eye problems

and I think that makes or breaks her day. Her knees are

swollen and her foot and toes hurt her.

She really does not say much but I can tell when she does

not feel good. Her faith is so strong I think thats why she

does not say much.

She is excited about going to Camp JAM 2001 this week.

Its a camp in Illinois for kids with JRA. Its two nites

and 3 days long, They are supposely going to help her

ajust and when to realize she needs help.I hope she finds

friends there.

well thanks for letting me join this group. I have so many ?

and I am now glas I have some where to turn

thaNKS

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July 9, 2001

where do yall live?

i am in Atlanta Ga and my daughter is 14 and was diagnosed at 12

your so right as to one day at a time

Robbin

July 9, 2001

Dear Lori,

Another welcome to the group! My daughter Kate is 6 1/2 with severe

polyarticular jra. (every joint on both sides of her body are affected

by it) She was dx. at age 3. It has been a long road at times but there

are times that things aren't as bad. We've been lucky in the fact that

she is very bullheaded and determined and has " grown up " with this so

she tends to take it in stride. Oh, there are times things get tough but

one thing I can say is you just have to take it one day at a

time--sometimes even hour by hour. She plays pee-wee sports and on her

" good days " is very active. As everyone here will tell you the worst

part of jra is it's unpredictability. I know that I read and study

everything I can get my hands on as it gives me some sense of control

over this. I know that it's extremely overwhelming at first and at

times can still seem that way--that's why you've found a good place to

talk to others. We can vent, get info , share stories and just find

strength from each other. Please keep us informed of how things are

going. Again, a big welcome to you both!

July 9, 2001

Hi, Lorie. In addition to the camps through the arthritis foundation (check

your local group for a camp in your area. You might still get in this

summer.) go to boggycreek.org for info on the camp sponsored by Newman.

That one is in Florida and is also free. They have various dates for various

problems plus family weekends. I'm thinking of trying that one for us since

is so unsure about camp this summer. Just thought I'd give you some

extra info! Welcome to this list. You will definitely get lots of great info

and support here. Georgina really goes that extra mile to keep us all up to

date. Great ammo when you go to see the drs. Michele

recentlty dx jra

Dear friends,

My name is MAry, my daughter is 7 and recently was dx with

Jra. What a day that was. I think I cried for hours. I thought

it was my fault. has her good and bad days, but latley

it seems good days are far in between. She has eye problems

and I think that makes or breaks her day. Her knees are

swollen and her foot and toes hurt her.

She really does not say much but I can tell when she does

not feel good. Her faith is so strong I think thats why she

does not say much.

She is excited about going to Camp JAM 2001 this week.

Its a camp in Illinois for kids with JRA. Its two nites

and 3 days long, They are supposely going to help her

ajust and when to realize she needs help.I hope she finds

friends there.

well thanks for letting me join this group. I have so many ?

and I am now glas I have some where to turn

thaNKS

To manage your subscription settings, please visit:

For links to websites about JRA:

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

July 9, 2001

Dear Lori, welcome to the group..!! By the sound of your letter it sounds

like your daughter has sytemic JRA..if you don't understand the different

types of jra make sure your Dr goes over it with you and makes it clear to

you the type of jra your daughter has.. I have a great book on juvenile

arthritis that i sent for and would be glad to send to you..I know when my

son was first diagnosed 5 years ago ( WITH SYSTEMIC JRA ) I didn't have a

computer and really had a hard time finding info on jra..,my husband and I

felt so scared and alone, we din't know where to turn.family and friends were

supportive but didn't have a clue as to what jra was about..we would sit

helpless by my sons bed as his fever reached 105 ..106.. wiping him down with

wet towels and feeding him ice chips, he couldn't walk at that time, toilet,

or feed himself.. this went on for 6 weeks until they finally started the

high dose steroids, which brought him out of it for the most part, for a

couple of years we played with the doses of prednisone and methotrexate, we

could never get him under 15 mg without a flare, but he went into a medicated

remission 2 years ago and we went down to 7 mg and we are now down to 1 1/2

mg ( he has been fever free for 2 years ) this group will help you alot..we

all support each other,, let me know if you would like the book. By the way

my son has been totally free of arthritis pain these past two years, and has

played basketball, soccer and little league, he is now 10 yr old Sincerely,

jane Conlon

July 9, 2001

Hi, I received many letters for you so it is hard to reply to everyone.

THANK YOU for the support. This is a good group and you are all so helpful.

I am not sure why exactly, buy I am not really happy to hear you think my dd

has systematic. Guess it doesn't really matter cause it is all bad but isn't

that worse? Oh, my. I thought they had a rash with that before the symptoms

of arthritis or at some time. She has never had a rash but she has been

having fevers for several days now. Highest it's been was around 103.5.

I am sorry if I sound so ignorant of my dd's arthritis, but frankly, I am.

We have a great rheumy and I am so happy with him. I have never seen a dr.

for my children that I really liked before. He is informative but maybe I

need to take a tape recorded for further reflection after our visits. Things

just don't set in for awhile and by then, I have forgotten most of it.

She has been on methotrexate and celebrex for a few weeks now. Dr put her on

mtx only and I took it upon myself to add the celebrex back in too cause she

was getting bad so fast again. I called to let them know I was going to do

that. We started with motrin, which hurt her tummy and didn't do anything

either, then we went to naprosyn with some tummy med too. Then I took her

off of it because it wasn't working and I thought it was stupid to ruin her

liver for nothing. Then celebrex and now the combination of methotrexate

too. Hopefully this will work. We missed our last appointment where dr. was

going to prescribe steroids and now I am kicking my self for now going. I

don't want those meds for her though.

She recently had another shot in her foot and that didn't last long. Today,

her foot is so swollen that I don't think it could get any worse. Wonder if

it could uh, nevermind. Today was bad but I am hopeful that tomorrow will

be better.

As far as symptoms go, she has that fever thing going on right now, her neck

hurts and she cant turn it real well, she shakes all over when you move her,

probably from pain, she was breathing weird the other day but I don't know

if that has anything to do with anything. The weirdest thing is that for

some reason for the last few months she has had problems making it to the

bathroom in time. I don't think this has anything to do with JRA either but

I don't know. It is just strange because she was trained by age 2 and never

had an accident since. Until recently.

Her next dr.s appt is not until the 20th and I keep thinking that we are not

moving fast enough. I really hate the " take this and see me in 2 weeks " over

and over and we just keep changing her meds. Ok, now I am just ranting.

Sorry, anyway, said that it took awhile to realize that it is not her

fault and I understand that. For awhile I felt the same way now I feel like

there is really so little that I can do. That is why I came to find a group

so that I could know if there was really nothing, or maybe there is. Liberty

doesn't say much either. She is so different then she used to be. Her 4th

birthday will be the 18th, on Wed.

I am glad to hear Jane, that your son can play b-ball. I bet it is really

nice to see him ber able to come that far. That is so nice to look forward

to and realize that is out there for her too. She loves b-ball.

I am going to check into a camp around here too, probably for next year.

Got a question, how do you dress your children when they are in too much

pain to move? I feel mean making her get up and go to the rest room cause It

makes her cry. Actually she screams in my ear. I just feel so bad for her

and I get to be the bad guy too and make her move. I seldom get to hold her

anymore.

My gosh, sorry about all of this. I can get carried away about lots of

things, especially this. I have no one else to tell.

Thanks for listening. Oh, and btw, Liberty has 2 younger brothers and of

course her daddy, Bobby too.

Lorie

Re: Hi. New to list

Dear Lori, welcome to the group..!! By the sound of your letter it sounds

like your daughter has sytemic JRA..if you don't understand the different

types of jra make sure your Dr goes over it with you and makes it clear to

you the type of jra your daughter has.. I have a great book on juvenile

arthritis that i sent for and would be glad to send to you..I know when my

son was first diagnosed 5 years ago ( WITH SYSTEMIC JRA ) I didn't have a

computer and really had a hard time finding info on jra..,my husband and I

felt so scared and alone, we din't know where to turn.family and friends

were

supportive but didn't have a clue as to what jra was about..we would sit

helpless by my sons bed as his fever reached 105 ..106.. wiping him down

with

wet towels and feeding him ice chips, he couldn't walk at that time, toilet,

or feed himself.. this went on for 6 weeks until they finally started the

high dose steroids, which brought him out of it for the most part, for a

couple of years we played with the doses of prednisone and methotrexate, we

could never get him under 15 mg without a flare, but he went into a

medicated

remission 2 years ago and we went down to 7 mg and we are now down to 1 1/2

mg ( he has been fever free for 2 years ) this group will help you alot..we

all support each other,, let me know if you would like the book. By the way

my son has been totally free of arthritis pain these past two years, and has

played basketball, soccer and little league, he is now 10 yr old

Sincerely,

jane Conlon

To manage your subscription settings, please visit:

For links to websites about JRA:

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

July 10, 2001

Hi Jane Conlon, could you please let me know the name of the book that you

referred to about juvenile arthritis. My 8 yr. old son was just diagnosed

with systemic in June and alot of what your son went thru sounds too

familiar. I'm so happy that he's in remission and his meds are coming down.

Hope we get to that point. Thanks, Barb Mengle

July 10, 2001

thanks for mentioning that on the clothes lolol

like the big shirts and baggy shorts most of the time

she will dress up when we go out but she does like the loose fitting clothes

best

and shoes lololol she likes them loose also

she would rather wear sandals than sneakers but the dr said the sneakers are

better for her feet and ankles

i thought it was just doing this

lolol glad to know the others do it also

Robbin

July 10, 2001

great lolol Coca Cola is big here have you been to the museum? the one

downtown Atlanta

the kids really like it

Robbin

July 10, 2001

Dear Lorie,

Hi again! Kate's mom (polyarticular--every joint affected) I just wanted

to write on the dressing thing. I know with Kate she very seldom wears

little girl jeans--usually stretch pants (and she wants them loose) and

I have to buy her shirts (usually tee-shirt type) at least one to two

sizes larger as her shoulders and neck are affected. (to look at her

though you'd never guess!) She likes very soft material as her skin can

be very sensitive (think from the fevers and just because of the pain

too) She also has a zillion pairs of shoes from her size to some a

little bigger (in case her feet are swollen) She's even went to

kindergarten this year wearing socks and sandals in the dead of winter!

(we live in Indiana) It's really hard when they are so young but you'll

also be amazed by how they " grow " and learn to cope with this. I pretty

much let Kate call the shots on what she wears as she knows exactly how

she's feeling. She always looks nice and doesn't stick out any by the

way she dresses. She also has underwear in various sizes as she has a

lot of problems with her hips. I go to a lot of yard sales, second hand

stores and clearance sales and " stock up " on clothes for her. I hope

something here helps.

Good Luck to you both,

July 10, 2001

Dear Robbin,

We live in Indianapolis Indiana but have been through Atlanta many times

as my parents live in Florida half of the year. Also went one time for a

Coca-Cola convention (husband works for them) It's quite a beautiful

city!

July 10, 2001

Tabitha also wore alot of stretch pants when she was little. She even wears

them alot now..it easier than buttoning jeans. Dresses come in handy.

Tabitha has shoes made for her feet, now of course she needs new ones..so we

are able to go buy them and take them to be adapted to her feet. I know once

they offered to make her a pair of shoes. Tabitha had to get her right ankle

fused when she was twelve...her foot went sideways, I was told it can happen

to children with poly jra...Her doctors always had me buy her high tops(to

support her ankles) when she was little. It was hard because Tabitha wanted

to wear dress shoes and couldn't.

July 10, 2001

Hi ,

Thanks for the thoughts on clothing. I suppose I can get rid of the jeans

now cause she doesn't like to wear them anymore either. I never really

thought about shoes of different sizes, I just leave hers really loose. The

PT says that she should always wear them (tennis shoes) but she just goes

barefoot most of the time. It is summer and she is still a little kid so I

don't think people think bad about it. Besides, socks are nice and comfy.

I have learned so much from you all already just in the way you talk about

how your kids feel. We have some tough kids here. Liberty is having a much

better day today and she is even in high spirits with a smile.

So far, she has about almost all of the joints effected on the left side.

Including her toes. If we could just get those toes and ankle better I

believe she could walk without too much better.

Good luck to you too,

Lorie

July 10, 2001

Hello to everyone again. I hope you are all doing well today. I was

wondering if I could get a little information about Methotrexate or

(whatever that stuff is called, don't know how to spell it right). For those

who have kids that are on this med, how much do your kids take, how long

have they been on it, and how do they take it? I have heard that it really

works in conjunction with another drug. How long does it take to see the

results. Also, can someone tell me what the steroids are like so that I know

what to expect if the Dr. puts her on them. Thanks so much and I hope I am

not asking too many questions of you all. Thanks for your patience with me.

Lorie

July 10, 2001

Hey,Lorie - Just an idea about the shoes. In my son's case, he has fallen

arches and in the ankle with the most pain that condition aggravates the

arthritis. Our pt said he should wear shoes with high arches to help with

the pain. More support means less pain. Maybe that is why your pt suggested

the same. Perhaps her feet would benefit from the support. Just a thought -

I go barefoot myself as often as possible and always have let my kids do the

same from the time they were tiny! Michele