where to find info

[Guest guest]

,

You can go to this web site and in the Keyword type in Juvenile

Arthritis. It will give you information on it. You can call your Local

Arthritis

Foundation and ask for Pamplets for the School. You will be asked how many do

you

want sent I would say about 6 or 7 as you want to be able to hand them out

to everyone who is in contact with your child. This will help you on that.

If your asking your Dr If this JA will go away in time? has Poly

JA and I asked that question your asking as well. Our Dr said there's no

Cure. Which answered my question. JA can go into Remission but it is still

there.

There will be a Cure one Day though. :-).

Can JA get worse? Yes Can it get Managable? Yes. has good days

and then she has bad days.

We have learned to take 1 day at a time. We use to plan things ahead of

time. This did not work well. As plans ended up being cancelled or rescheduled.

The Take one day at a time works good. What I do now is plan 1 day ahead and

always say ok I am planning this but if something comes up I will have to plan

again.

Robbin

Robbin

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I took the DR's advice and called my sons school and spoke with his

principal and this teacher (which called me after hours to dicuss

this which i thought was great). I do have a question for all of my

friends of the JRA group they are wanting some info on JRA and its

effects etc. Where can I find some information to share with them

that they can use and easily understand. I know that not being a

medical person and looking at some of the things you find on the

internet it very confusing which the school went web surfing today

to find out more info on their own. One question keeps comming up

that I am not really sure how to answer. WHich they dr yesterday

said that we would discuss all of this in further detail at the next

appt, the question is (which i think i know the answer but do not

want to give bad info) is is this something that will just go

away. I think from everyone i have talked with and everything i

have read that they really dont know the lasting effects that it

*can* go away but they are really not sure. Is this the correct

info. I know from talking to the DR a little that its a very unsure

disease that there is no real definate pattern to it that some it

goes on for life and it is then called stills and sometimes they go

into permenment remission. is this accurate? I know when the DR

referred to Calebs diagnosis he said it was stills and i inda looked

at him like ummmmm and he said oh that is systemic JIA. So I guess

after all of this rambling where can I find info to share with the

school.

[Guest guest]

thank you for the tid bit LOL. you think ok I am ready for the diagnois whatever

it is and then wham you cant believe what they just said and you feel like you

are listening to the dr but not hearing what he is saying I am sure you all have

had this. The school before we had a dx and I spoke with the secertary she

wasnt the nicest person in the world about all of this (maybe she was having a

bad day) so I called back today and talked with them again they said they will

not hold him back for missed time as long as he keeps his work up and they will

offer him ulternatives to gym on bad days and they are all very concerned and

very willing to help us with this...what a relief and a big turn around since my

first call to them about 10 weeks ago!

deerhuntert6@... wrote: The Arthritis Foundation has a great

website. Go to Juvenile Rh. section.

Glad that you all finally got a diagnosis. Hope Caleb is feeling better

really soon. A little tidbit of advice for you . You have been under a

lot of stress and worry these last few weeks. Take alittle time for yourself

- do not let this disease control you and your families life - Continue to

have fun and when Caleb is having a good day - enjoy it to the fullest - and if

he has a difficult day - well just take it minute by minute. My Hunter

taught me that. Sandi Ken Hunter (9 Systemic)

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

If you go to the Arthritis website, there are pamphlets there you can get for

free to pass out. They even have one made for teachers. That will help. If your

child is in public school the 504 or IEP plans help it seems. My son went to

private school, so all I did was go and talk with the teachers and office staff

and they were very willing to work with whatever needed. We did not need

to have a formal thing in place at either his grammar school or high school.

When people ask if this will go away, that is a hard question to answer. Many

systemic kids do go into some sort of remission; some people say they can

" outgrow " the disease. But if there is joint damage of any kind, that they will

not " outgrow " so they may have pain still. We were told that with what our son

has, he will always have to deal with it for the rest of his life, in some

fashion. Personally, because the disease, even if it has been in remission

whether medicated or a true remission can reappear, I would say they would

always have the disease. Plus, the child may have good days were they seem

perfectly fine. That does confuse people. They may say that since the child is

running around today, they are fine. They may not realize that the inflammation

can occur for a while and not flare at other times. It's kind of like someone

who suffers from migraines. They do not walk around with that pain all the time,

but when something triggers it the pain is debilitating. JIA can be like that.

Or the child may learn to deal with the pain and make accommodations an observer

may not notice, for example walking a certain way or holding the pencil a

certain way or not using a joint at all.

I know that Georgina has posted lots of medical type info here in the past about

the various forms of JIA. You may want to look into past posts to see if

anything is helpful. Hope this helps somewhat, Michele ( 20, spondy)

________________________________

From: [mailto: ] On Behalf Of

nurse0300

Sent: Tuesday, January 08, 2008 7:31 PM

Subject: where to find info

I took the DR's advice and called my sons school and spoke with his

principal and this teacher (which called me after hours to dicuss

this which i thought was great). I do have a question for all of my

friends of the JRA group they are wanting some info on JRA and its

effects etc. Where can I find some information to share with them

that they can use and easily understand. I know that not being a

medical person and looking at some of the things you find on the

internet it very confusing which the school went web surfing today

to find out more info on their own. One question keeps comming up

that I am not really sure how to answer. WHich they dr yesterday

said that we would discuss all of this in further detail at the next

appt, the question is (which i think i know the answer but do not

want to give bad info) is is this something that will just go

away. I think from everyone i have talked with and everything i

have read that they really dont know the lasting effects that it

*can* go away but they are really not sure. Is this the correct

info. I know from talking to the DR a little that its a very unsure

disease that there is no real definate pattern to it that some it

goes on for life and it is then called stills and sometimes they go

into permenment remission. is this accurate? I know when the DR

referred to Calebs diagnosis he said it was stills and i inda looked

at him like ummmmm and he said oh that is systemic JIA. So I guess

after all of this rambling where can I find info to share with the

school.