Re: New here and new to JRA

[Guest guest]

Welcome Debbie and Annie!

I'm sorry to hear that Annie has so many joints involved. Poly jra

can be quite dramatic. I wish you strenght to cope with this. And I

hope you are satisfied with the care you are receiving. Did they do

any joint injections?

Meds will help her but it's hard to be patient and wait and see

what's the right.

I wish you and Annie well and hope she'll be better soon!

Soili from Finland

mom to Inka 13, Jukka 12 (epilepsy), Juho 9 (pauci jra)

stepmom to 18 and Sanni 16

foster mom to Juha 8 (poly jra, developmental delay, epilepsy), Anni

5, Anniina 4, Salla 3, Joonas 2 and little Juho 18 months.

[Guest guest]

Debi, Welcome to the list. You might want to let all of the teachers know

what is going on. Every year I write a letter to n's teachers and let

them know a bit about her disease. I figure it is better to be proactive,

rather than reactive. Then if she gets sick during the year, I have my

bases covered.

My other advice would be to keep a diary about all of your daughter's

symptoms , meds, etc. It sounds like she is getting pretty good care.

(n,15, systemic)

New here and new to JRA

> Hello Everyone;

>

> I have been lurking here for a month or so. I am learning so much by

> reading your posts. At the beginning of the summer we found out our

> 11 year old daughter has JRA/poly. Started out tame enough but

> within a month and a 4 day stay at the Children's hospital with

> bursitis of the hip " it " hit the fan. I think the only joints not

> effected are the elbows. She is currently taking 250 mgs of Naproxin

> twice a day., 10 mgs of Prednisone (down from 20mg)once a day .4 ml

> of MTX once a week. She is still in pain, just not as bad. School

> starts next Tuesday. I am at a total loss and am frustrated with

> this disease. How unfair it all seems. But I am thankful it is not

> worse.

>

> God Bless you all

>

> Debi (Mom to Annie 11 JRA/Poly)

>

>

>

>

>

>

>

[Guest guest]

--Hi Debi..

Welcome to the list... IM sorry though that you had to join in the

1st place as it means yet another child is having to deal with this.

It might be a good idea to call the school and ask to talk to the

nurse and your daughters teachers and let them know whats going on.

Your daughter might need to have a IEP put into place to help her.

Also theres a booklet thats called " when your student has

Arthritis " that you can get from the Arthritis Foundation. I find

this is very helpful to give the teachers a brief quick over view of

whats its like for your child.

Again, Welcome...

Helen, mom to (7,systemic)

- In , " Debi " <debiannp@y...> wrote:

> Hello Everyone;

>

> I have been lurking here for a month or so. I am learning so much

by

> reading your posts. At the beginning of the summer we found out

our

> 11 year old daughter has JRA/poly. Started out tame enough but

> within a month and a 4 day stay at the Children's hospital with

> bursitis of the hip " it " hit the fan. I think the only joints not

> effected are the elbows. She is currently taking 250 mgs of

Naproxin

> twice a day., 10 mgs of Prednisone (down from 20mg)once a day .4

ml

> of MTX once a week. She is still in pain, just not as bad.

School

> starts next Tuesday. I am at a total loss and am frustrated with

> this disease. How unfair it all seems. But I am thankful it is

not

> worse.

>

> God Bless you all

>

> Debi (Mom to Annie 11 JRA/Poly)

[Guest guest]

Hi Debi:

Welcome to this awesome group. I don't know what I would have done without

this group when my daughter was so sick. I asked tons of questions and always

got an answer. A wealth of care, compassion and knowledge is found here.

My daughter was 11 when she was stricken with JRA. She has Still's

Disease/Systemic Onset JRA. I am glad to hear that Annie has had some relief

from her

pain. You may want to ask for an extra set of books for her when school

starts. That way she won't have the weight on her back carrying them all home.

We

also asked for Caitlin to leave classes a few minutes early so she wouldn't

get crushed when classes change. Being in a middle school hallway at class

change is scary enough for an adult. It's a sea of kids!

Take care.

Patty

[Guest guest]

Debi - I am sure you have already recieved lots of welcomes, but I

wanted to send one out your way. My daughter is two and also has

Poly. It it a very frustrating disease, but you have come to the

right place.

Welcome!

Alia and Caroline, age 2, poly and uveitis

> Hello Everyone;

>

> I have been lurking here for a month or so. I am learning so much

by

> reading your posts. At the beginning of the summer we found out

our

> 11 year old daughter has JRA/poly. Started out tame enough but

> within a month and a 4 day stay at the Children's hospital with

> bursitis of the hip " it " hit the fan. I think the only joints not

> effected are the elbows. She is currently taking 250 mgs of

Naproxin

> twice a day., 10 mgs of Prednisone (down from 20mg)once a day .4

ml

> of MTX once a week. She is still in pain, just not as bad.

School

> starts next Tuesday. I am at a total loss and am frustrated with

> this disease. How unfair it all seems. But I am thankful it is

not

> worse.

>

> God Bless you all

>

> Debi (Mom to Annie 11 JRA/Poly)