Jodes are you still out there? How is your son doing? My son just turned 11 and we are starting to have several flares now. The latest in a tendon (we think that is the cause), made me think of you and wondered how things were going on with yours!

By Jodes on Saturday, November 18, 2006 - 10:16 am:

Hi Kaye, I am sorry for responding so late, I happened to see your post at the general discussion board. I am sorry to hear that your son is having problems. My son is also 11, and for the most part, he is still doing well. He has his days where he will limp on and off from leg pain, or his arms bother him, but motrin works well for him. He probably takes motrin about every other day to keep pain under control. Otherwise, he hasn't been on any perscription meds in over 3 years. We watch him very closely for any systemic symptoms, and the only issues he really has systemically now is occasional stomach problems. We are so thankful for how well he has been doing, but as you know with this disease, you have to take it one day at a time. Has your son seen the rheumatologist? Is he taking any medications? I hope he feels better soon!

By Kaye on Wednesday, December 6, 2006 - 08:31 am:

I forgot to come back and post.

We had a rheumy appt today. They have changed his dx, after 5 years, I am a little shocked. They say it is spondylitis. The original doctor thought that at first, but he doesn't have the genetic marker, but only 80% do. Not very good news for us. But does answer some questions...first we always felt like his was more systemic, but he didn't have the typical rashes that he should of had. But it seems like his whole body would ache and he would get weird other things, like his heels hurt a lot. So that makes more sense.

Anyway, it isn't really what we wanted to hear, because unlike JRA he won't outgrow this. With jra at puberty a good percentage out grow it.