a hello and search for advice

[Guest guest]

Hi all

My name is and my 4 yr old daughter Lily was diagonosed with

JRA at the end of May.

It all began with a very swollen knee. We spent 3 months bouncing

around from dr. to dr.and having test after test, when finally after a

positive ana we landed in the rhuemotologist office. They asked just a

few questions and within minutes said she had jra. They gave us a

prescription for Napryson 2 times a day and sent us home, telling me

not to worry that this would make it all go away. They said no

rescritions were necessary and she would be fine. She wasn't

complaining much at the time, so I didn't question much further. We

made an appt. to come back 8wks later and drove 3hrs home.

Over the next 2 months she complained a little more and there was no

change in the swelling.

We went back the second week of July. First we saw students, who asked

me all the same questions I had answered eight weeks before. I told

them all the same answers and that there seemed to be no change in the

swelling and was complaining more. They left and came back with the

dr., who asked the same questions that they did. He looked at her knee

and told me the only thing at that point to do was to drian it and

inject a steroid. It was horrible. I felt so guilty and just plain bad

that I had to let her go through that. They numbed the area, but she

felt it and she screamed and cried, and my heart hurt.

The dr. again told me that this should take care of it and to continue

with the Napryson, then he left. I had questions this time. The nurse

stayed and told me no restrictions, but that she could not go back to

dance in the fall. I told her that I was worried about it spreading to

her other joints and the nurse told me that it was not a concern

because most of their patients that presented this way stayed

unilateral in the one joint and the steroid injection would put it in

remission. I was so emoutional when we left. I didn't understand why I

had to keep her out of dance, or why they seem to take this lightly.

How is it that they keep telling me that this one thing they are gonna

do is gonna make it all better.

The steroid injection did work for a few weeks. Now the knee that was

affected looks a little puffy and the other one is a little bigger than

that one, but neither looks like the left knee did in the beginning.

She has also started to limp again from time to time. She started pre-k

this week and came home everyday telling me that her knees hurt, and

then spending the rest of the afternoon sitting on the sofa,which is

very out of character for her.

We were also invited to vist family out of town this weekend, and

before we left she asked me if there were stairs in the house we were

going to, because she was worried about knees hurting. That just made

me cry. She is such a tough little thing that for her to ask that and

even to admit that it bothered her at school means she was really

hurting.

I am at a point where I haven't a clue what I need to be doing to help

her. I can't imagine how we are gonna make it through the school year

with her hurting so much after only a few days. We have another rhuemy

appt this week, but I'm just afraid it will be more of the same. I just

want the dr to be more intrested and talk to me. I want him to really

help me make it better for her.

I know you all understand and have been here, please tell me what I

need to be doing. Is there something I should be saying in our appts?

any and all advice is much appericated

thank you and sorry this is so long

Mire

Lily 4 Jra