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!!


Sunday, April 6, 2008

Spring has sprung...

And I'm hoping that means an end to this crummy winter in Southern Ontario. It's been just brutal. Amanda has had a rough one. According to her physio, she's definitely seen an increase in her clients' pain and discomfort this winter.

Amanda is now going 5 weeks between treatments - this is her first month doing so. And it's not been good. She's definitely feeling that extra week. And she's been having some significant pain even shortly after her treatment. Not pleased about that! I've emailed the rheumy and he said he's happy to see her sooner than we planned if I would like her seen. I'm going to wait and see how well she feels after her next treatment and go from there. She's definitely been modifying her gym activities lately - can't do some of the running/jumping stuff. Sigh.

On a more positive note, Amanda won a bronze medal at the county-wide science fair! They had 214 projects. This was her first year doing it so we're pretty proud of that - kids don't often win in their first year. And she isn't a "science geek" kinda kid. She's more an artsy fartsy. But her and her friend (whom she did this project with) are already talking about what they'd like to do for next year!

Other than that, life is "normal" - I put it in quotes 'cuz it's as normal as it's possible for it to be for us but still hectic. My new job brings a ton of resposibility and I am sometimes feeling very much overwhelmed by it. But I try to get thru it day to day and do my best and I figure that's all anyone can ask!

Hoping all children like Amanda are doing well!!


Monday, February 25, 2008

Bit of an update...

Hey folks -- as a friend so gently reminded me, it's been awhile since I posted an update so here goes!

Things are going OK for Amanda -- not great but better. She continues to have very slow improvements but we still have a long way to go. We saw the rheumy a couple of weeks ago - he was pleased with her response to the treatment and wants to go to every five weeks. I'm skeptical but willing to give it a try. Amanda continues to have significant pain in the week just prior to her next treatment.

We finally got an IEP (individual education plan) in place for gym. They physiotherapist from the Arthritis Society has given Amanda a series of exercises she can work on to work at to improve her strength and mobility. She does them during gym class if the class is participating in something she shouldn't be doing - running, jumping, etc. Amanda hates being separated from the class to do her exercises but her teacher is afraid she'll get run over if she does them in the gym during class.

Other than that, not much to report. Her eyes are still fairly clear - whether that's because she's doing well or she's responding well to Remicade, we don't know. And at this point, I don't care! She's doing well and that's all that matters!

And just a reminder that March is Juvenile Arthritis Month! Here at the University of Waterloo, I'll be doing our 8th Annual Two for Blue day - pay a twoonie, dress in blue, and support juvenile arthritis research. See if you can get some companies in your area involved!

Thanks for reading!