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Old 07-13-2003, 06:59 PM
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Juvinile Arthritis

My 8 yr old daughter was recently diagnosed with Juvenile Arthritis. The rhumatologist seems wonderful, but I want to connect with other moms, to share experiences, and make sure I am being the best advocate I can be for my child.

I have her in a main-stream swimming program, and while the exercise is good for her, it's a fine line between theraputic exercise and just too much. It's hard to make the coaches understand that this kid has arthritis, and needs to be treated differently in some respects. At only 8 she has trouble standing up to an authority figure when she has pain, and they are saying "go, go , go!"

I also have to consider how to deal with school this year. She is doing fine on medications, but does have flares. I have to decide if I should seek classification for her, or just play it by ear.

Any sage advice?
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Old 07-13-2003, 08:16 PM
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Re: Juvinile Arthritis

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Originally posted by Lifestar
I also have to consider how to deal with school this year. She is doing fine on medications, but does have flares. I have to decide if I should seek classification for her, or just play it by ear.
Any sage advice?
Val - I know nothing about juvenile arthritis....the only other person I know with it is my parents' neighbors. Their DD was diagnosed with it when she was just two yrs old!

Anyway, I am wondering....... if you approached the school about a classification for Julia, what changes or accomodations would they make for her?? Also, how does Julia feel about that possibility?
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Old 09-30-2003, 12:04 PM
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A kindered Spirit

Hello,
My ds who is know five and half was diagnosed with JRA at age 2 1/2. We too have struggled with the how to handle school as this was our ds first year.

I have searched for another mom to connect with who can understand the struggle of helping a child with this disease.
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Old 12-29-2003, 09:23 AM
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hi there

Just popping back in to say hi, and post an up-date.

The school year is going well so far. A 504 plan was put in place with the school, and they are being very cooperative. We only had one problem with one substitute teacher... but that was dealt with , and a system put in place to make sure that it won't occur again.

One discouraging thing was that my older daughter has now also been diagnosed with a milder form of JRA as well. It seems it runs in the family. Thank G-d it is not the more serious form of the disease for either of them.

Heckmom... Ask your child's doctor about the OCtober Fund if you havent already. It's a grant program that offers up to $800.00 per year to support activity programs for children with arthritis. It's offered by the National Arthritis Foundation, and granted by your local chapter. It's not awarded on a financial needs basis.. it's awarded on the basis on confirmed illnes. Your child's doctor has to supply the form for you. It helps to pay for those exercise or camp programs that kids with arthritis have to participate in...

Both my kids have been given applications by the doctor. It will help a lot. These excersize programs cost a lot of money But they are very necessary.

There has been a lot going on in our lives this year. Very stressful.. A couple of very difficult losses.. also dealing with chronic illnesses and the art of letting go... sadness and anger... not a lot of obvious joy. A lot to test the mettle of an adolescent and a pre teen...

Not to mention their mom...

Well I'm hoping that next year will bring better Karma...

Here's hoping..

Val
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