Tuesday, July 15, 2008

It's been a year....

Well, it's been a year since Amanda started Remicade. What started out as a promising option sure hasn't ended up that way. Amanda is finding very little relief between treatments. I was hoping summer would give her some time to relax and recoup but it hasn't worked yet. We're back to treatments every four weeks and we've upped her methotrexate to 10.5 mg injectible/week. So far there's only been slight improvement.

The rheumatologist also suspects she has something called adolescent girl knee syndrome. What happens is, as girls develop and hit puberty, their posture changes. So their knees are no longer directly over their feet like they should be. So he's given us some exercises for her to do to strengthen the inner muscle of the thigh. The reason he thinks it's this is 'cuz the pain she feels when he's poking at her isn't on the joint line - it's sorta the top of the knee. And there is no heat in the knees which means it isn't an arthritis thing. The pain in her ankles is an arthritis thing - sore along the joint line and hot. So he's hoping the exercises will do the trick for the knee and the quicker drugs will help the ankles. He also said we have an option of increasing the dose of Remicade. So that's good to hear - I was afraid she was on as high as she could get. Her inflammation markers in her blood work are way down so I'm suspecting that we're dealing with chronic inflammation now as opposed to acute. We go back to see the doc in August.

Hope everyone is enjoying their summer!!


1 comment:

Julia Sutton said...

Hi Michelle, I am just in the process of setting up a website for parents of kids who are rheumatology patients at our local hospital. The website is called JointPainRellief - I am sending you a link to the page I have set up that mentions your blog. Here it is-

Please check out our baby site. I wonder would you consider writing us a guest blog post sometime?- we would be honoured to publish it. I'm thinking something like - 10 Things Every JA Parent Should Understand - Best wishes and congratulations on a valuable blog. Julia Sutton