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!
Monday, January 4, 2010
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!
Michelle
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!
Michelle
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!!
Michelle
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!!
Michelle
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!!
Michelle
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!!
Michelle
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!
Michelle
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!
Michelle
Tuesday, December 4, 2007
A big WOO HOO for Amanda...
I KNEW there was something I was forgetting! The last two weeks Amanda has gotten her methotrexate shots while she was awake! For the last 6 yrs, she would insist on having her needle while she was asleep because the thought of having it awake made her ill. A couple weeks ago, on Friday night, she asked if she could have it just before she went to bed. I said "Absolutely" and got everything ready. I gave it to her and she just looked at me and said "Is that it???". I think she'd truly forgotten how to have it awake and had exaggerated memories of how bad it was! She laid down and fell asleep with no problems. I'm so proud of her! This was always something that really bothered her and she's overcome it!!
Michelle
Michelle
Woefully behind in posting!...
Well, there hasn't been much to report - good or bad - so I'm woefully out of date on my blog!
Amanda is doing OK - still not 100% but better. She finds she has some discomfort towards the end of her four weeks between treatments. She went for an MRI last week - the right side of her jaw has been giving her trouble so the rheumatologist would like to see if it's moved to the other side. Amanda was pretty freaked to do it but, with her usual grace and courage, she got through it just fine. I'll touch base with the pediatrician on Friday to see if he got the results yet.
Other than that, just trying to get ready for the Christmas holidays! We have a pretty good blanket of snow on the ground now so hopefully it sticks around - no green Christmases here!
The one tidbit of news I have -- Amanda has been asked to be in a video the Arthritis Society is commissioning to raise money in a new fundraising initiative called The Competition for a Cure breakfast. We'll have a video crew following us around all day Friday - it's her treatment day so a good day for a photo op! She's totally psyched to be in it!!
Michelle
Amanda is doing OK - still not 100% but better. She finds she has some discomfort towards the end of her four weeks between treatments. She went for an MRI last week - the right side of her jaw has been giving her trouble so the rheumatologist would like to see if it's moved to the other side. Amanda was pretty freaked to do it but, with her usual grace and courage, she got through it just fine. I'll touch base with the pediatrician on Friday to see if he got the results yet.
Other than that, just trying to get ready for the Christmas holidays! We have a pretty good blanket of snow on the ground now so hopefully it sticks around - no green Christmases here!
The one tidbit of news I have -- Amanda has been asked to be in a video the Arthritis Society is commissioning to raise money in a new fundraising initiative called The Competition for a Cure breakfast. We'll have a video crew following us around all day Friday - it's her treatment day so a good day for a photo op! She's totally psyched to be in it!!
Michelle
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