Friday, December 31, 2010

A new year - hoping for good things!....

With the New Year almost upon us, I get to thinking about what 2010 has brought.  Spring started out with tons of pain for Amanda with her fibromyalgia.  Things seemed to improve a bit when things dried up.   Her summer and fall has been pretty good and her pain seems to be mostly under control.  But, just because she doesn't have enough challenges, she developed an ovarian cyst in November.  We spent the better part of two days in the emergency room before he pediatrician (who happened to be on call when we went in for visit #3) took charge and finally got her the tests she needed to give them a diagnosis.  She had an ultrasound a week later and it seems to have shunk.  She had another one this week so we'll see what happens! 

I am hoping that 2011 will bring good things for all and any kids who suffer from this terrible disease. 

Wednesday, October 13, 2010

OK, time for an update!....

As a fellow JA mom reminded me, it has been some time since I updated this. As I'm sure you all experience, life sometimes gets in the way.

So here's where things stand for Amanda. Right now she's doing alright. She had an absolutely awful spring. Her fibromyalgia really kicked her ass. She misssed more school than she attended but she still managed to have an 80% average last year! She got into a vicious cycle - she was too sore to exercise but exercise is supposed to help. The chiropractor didn't work. And the low dose antidepressants to help her sleep help somewhat but not enough. When thigs warmed up and dried out, she noticed an improvement.

She had a pretty good summer. We visited Disneyland in California. She spent most of it in a wheelchair but that was preventative as well as reactive. She had some pain and we didn't want it to get worse so using a wheelchair helped with that. Disney service is incomparable most times but out of this world when you have someone who needs a little help!

Amanda started grade 10 and seems to be off to a pretty good start. She's had a couple of weird things. First off, her chest hurts. Apparently there's a joint in the chest and pain there is often a teenage girl sympton but seems to be unrelated to her arthritis. Then her hands have been shaking. Not sure what is happening there but it seems to be increasing in frequency. She is scheduled for her next Remicade treatment in a couple of weeks so we'll discuss that with the pediatrician.

Her uveitis has been under good control as has the pressure. We're hoping we've turned a corner with this because it's been a rough battle. After the last surgery in November 2008, it took a long time to get things calm again. I know God isn't supposed to give you more than you handle but He really bit off more than I can chew sometimes! But Amanda has managed to face it all with her usual grace and strength. She amazes me sometimes. Now, I'm not saying she's perfect - on top of the pain, there's the teenage girl thing that can make things difficult. But she's usually able to keep a smile on her beautiful face.

The 6th annual Amanda's Cruise for Juvenile Arthritis was a success! We had a beautiful warm and sunny day and 50 cars joined us. I'm not sure what the total was for raised but I think it was over $2000. It's alot of work and I wish we could get a better turnout but Tim loves doing it and we have a lot of fun.

Amanda also began something new - it's called Bowen treatment. It's like they press on pressure points in the body to get the nerves to "reset". Amanda finds it very relaxing and often falls asleep during it. Now it hasn't completely taken away her pain but I think it's taken off the edge. I'm hoping it'll help her have a more normal spring. If she has another rotten spring, she may be taking a couple of courses through correspondence. She'd take two at school and two via correspondence. Not ideal but certainly an option.

So I guess you're now brought up to date! We have a rheumatologist appointment next month so I'll try to update after that. And I promise I'll try to be more regular about this. And I apologize to the couple of legitimate comments posted. I got so many spam messages that your posts got lost. To the person mentioning the Arthritis Foundation, we are in Canada and have used the Arthritis Society as a resource. Amanda has a physiotherapist who visits regularly from there. To the person mentioning the conference in July -- we would very much love to try to come to one of them. But again, we're in Canada and the travel can get expensive.

So adieu and {{{{{HUGS}}}}} to all of my fellow JA moms!


Monday, January 4, 2010

Hope springs eternal!...

Wow, 2010 already?? Where has the time gone!?

It's been a bumpy ride for Amanda. When she went to see the rheumy in May, she was diagnosed with fibromyalgia. Well, at least we now have a name for all the pain she's been in without any inflammation! Not that it makes it any easier to deal with. The rheumy said the most effective way to deal with it is through exercise since she's already on enough drugs. So Amanda has taken up a fibro swim class which she enjoys alot. And she's been walking home from school when she can - a good 20 minute walk but usually takes longer since she's walking with friends and she's too busy gabbing to walk quickly!

She wasn't seeing any improvement over the summer with her pain levels and, in fact, her pain worsened in the fall. When she went back to the rheumy, he said the only thing he can recommend is exercise. He mentioned that she could consider going on low dose anti-depressants to help with her sleep cycle. After a LONG discussion with the physiotherapist, Amanda decided that was the best option for her. She began them 5 weeks ago. She feels like she's sleeping better but she's not sure about the pain levels. When we discussed it with the pediatrician at her last Remicade infusion, he said that, for alot of kids, the six week mark is like someone flicked a switch. All of a sudden they notice an improvement. So we'll see!

Other than that, we had a wonderful Christmas break full of lots of reading, eating, watching movies, and hanging out with friends and family. My DH Tim will also be participating in the Joints in Motion marathon on January 9th in Disney World. Not sure how I agreed to let him go to Disney without me!!??

Hope everyone is well and pain free -- may 2010 bring improvement for all!

Wednesday, May 20, 2009

History repeats itself....

First off, my most humble apologies for not updating this on a more regular basis. Of course, life always gets in the way!

Yes, history has repeated itself. Spring has again brought with it agony for Amanda. She has had no relief from her Remicade appointments. I hope that, with the warmer weather finally arriving, she may soon find some relief. She's missed quite a bit of school but has managed to keep up with her studies. And high school is just around the corner!!!

So sorry this is so short! Hopefully the next report will be better - and longer!


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!