Hi Karen:

I can't imagine worring about this disease with your child...It's bad enough
that we as adults have to deal with it. I wish you guys luck with the enbrel. My
rheumy wants me to start enbrel, too, but I'm trying to hold out until January
for various reasons...actually, I may be starting with sulfasalazine first. I
don't know a whole lot about it yet (sulfasalazine), but I still have some time
to do my own research before January. My little boy is 8 and has recently, out
of the blue, been complaining of heel/achilles tendon pain...so you know what my
first thought is, right?? That's how my symptoms started, but I was 32, not 8!!
Like I said, I can't imagine this afflicting my child and I hope and pray that
the pain he's having is not related to AS or any other spondyloarthropathy. Best
to you guys!!

Pia

ksvarbalow <blacktie@...> wrote:
Ah, where do I start? I guess with Hello,
I just joined the group, hoping to get some first hand accounts of
living with AS. My son, who is 15 years old, has just been diagnosed
although he has been having symptoms for a little over four years
now. He had been in remission for a little while, and we've all been
in denial for a lot longer ! But I just took him back to his
pediatric rheumatologist (a good hour to hour and a half ride for us
here in Florida) after having x-rays and MRIs of his spine and hip.
The doctor was unable to make a definitive diagnosis a few years ago
when we saw him last because only one sacroiliac joint was affected
and he's HLA-B27 negative. But now his other sacroiliac joint has
flared up and is causing some pretty extreme pain and he seems to
have lost a little flexibility in his spine. We've started him on
Enbrel and I'm hoping it's indeed the miracle drug that Wyeth claims
it is, but the realist in me knows that I need to be prepared for a
lifetime of dealing with this disease. I think it's every mother's
nightmare to know that her child has a serious health problem.
Fortunately he's a pretty easy-going kid and for now at least he's
dealing with it well.
Anyway, any words of wisdom out there? I'd love to hear from other
parents who are helping their children cope with this. And I'd also
love to hear from anyone who has seen any significant improvement
from a change in diet.
Thanks,
Karen V






---------------------------------
Shape Yahoo! in your own image. Join our Network Research Panel today!

[Non-text portions of this message have been removed]