Friday, October 29, 2010

next episode

     The first flare up came and went. We were hopeful that it was going to be just that one time. We had booked a follow up appointment with our rheumatologist and a few days before the date was there, a new flare came. Same knee. By the time we saw the doc, the swelling was down a lot, however she still found fluid in her joints. So more drugs were added. We went home and the same thing happened; the knee got back to normal. With the following episode, her other knee flared up so we were confused; is it traveling from knee to knee now?

     More doctor visits followed. We were trying to find a pattern, like weather changes, different activities, seasons. We couldn’t figure anything out.  The doc wanted to make sure there were no underlying things we were missing so she ordered more tests. One of them was a gastro intestinal check…a barium swallow. For my daughter that was one of the most uncomfortable things she has ever done. Drinking a cup the size of an extra large coffee with liquid chalk…no fun! Another negative was that we went to a general hospital for this. No offence, but it was obvious they were not used to dealing with children. Despite the fact it is a 2 hour drive (4 hours back and forth) every time, the children’s hospital we are visiting is a fantastic place to be. My girl likes to go there, and that is a big deal if you have to spend quite a bit of time there. 

     Anyway, nothing else was found that could explain My girl’s flare ups so we were just trying to find the right cocktail of drugs that was going to do the trick for her.

     The years that followed we saw a pattern of her being stable for a bit and then a flare up would occur again. Looking back on her flares, you could always see them coming. She would be very tired, grumpy, uncomfortable, and her energy level would be very low. She had never had a lot of pain up to that point; it was more the stiffness and lack of energy that would bother her. 

     The doc decided it was time for a different approach; steroid injections in the affected joint; her right knee. This is a procedure where fluid from the joint gets drained and steroids are injected directly in to the joint. This first one worked wonders, we saw almost instant relief and she was “swelling free” for quite a while. Almost a year.

     We were very excited for our doc had told us that when she would be a year symptom free we could start looking in to weaning her off some drugs. And then , one day BOOM, we were right back to where we started. Huge knees. At that moment we realized we needed to change our approach. My daughter would be so disappointed every time a flare would come that we could no longer “pretend” it was all going to be okay. It wasn’t fair to her to get her hopes shattered every time. So , as of that moment , we were no longer hoping for remission, but instead trying to live with the facts and giving it a place, make it part of our life. In case remission did occur, we would be happy about it, no doubt!

     That’s it for now again, next post will hopefully be the final chapter of our history with Arthritis and from there on I will just try to keep you updated with more current stories. Sure have some exciting (for me at least!) things coming up! Keep you posted!

Sunday, October 24, 2010


     Our family doctor referred us to a pediatrician. The pediatrician referred us to a pediatric rheumatologist. First blood work needed to be done, an MRI was ordered and off to the rheumatologist we went.  There are not too many pediatric rheumatologists out there, but we were lucky enough to find one “just” two hours away. Looking back on it, we were and still are very fortunate to have her as a doctor. My daughter and her seem to get  along great, there is a trust there and my girl certainly gets the feeling she is involved in her own treatment. 

     But , first things first, a diagnosis had to be made.  The verdict was Oligoarticular JRA, which affects four or fewer joints( Symptoms include pain, stiffness, or swelling in the joints. The knee and wrist joints are the most commonly affected.)  My daughter was started on Naproxen (a so called NSAID; non steroid anti inflammatory drug) and we were not too worried about it all. As I had mentioned earlier, my girl is a bit on the “shorter” side, and we learned that this may be caused by her condition. Slower growth.  Also, the joints affected may actually grow faster what sometimes may lead to one leg that is longer than the other. (As we continue on with our story, you will find out that that is also the case with my daughter. Almost everything that potentially could happen has happened with her!)

     Another scary element of arthritis can be inflammation of the iris (the colored area of the eye) This inflammation, called iridocyclitis, iritis, or uveitis. One can’t feel it, but it can lead to blindness so regular visits (twice a year) to an ophthalmologist are in order.
So, after we got our diagnosis and the guidelines we had to follow we went home in good spirits, pretty convinced that this was just a short term inconvenience and were very hopeful we were just going to deal with this episode and be done with it all.

Boy, were we ever wrong!  
To be continued!

Monday, October 18, 2010

In the beginning....

My family and I moved from Holland to Canada 7 years ago, in 2003. Was quite the move, but looking back on it I would do it again in a heartbeat.  It took us about a year to adapt to the Canadian way of living. Working hard, but enjoying our new life and excited for the future.
Both my girl and my boy were doing fine; making friends, learning a new language, exploring their new environment and enjoying life “in the country”.
One day my girl gave me the biggest scare of my life. (I mention this, because looking back on our whole ordeal I believe this is how or where it all started.) We were close to Halloween and she wanted to try on her costume. To make it all look official I suggested I would do her face makeup too. (That’s kind of a hobby for me.) I believe she wanted to be some kind of princes fairy or whatever, forget the exact nature of her outfit. I asked her to close her eyes so I could paint them. She couldn’t do it and I was a little upset with her, for I thought she was kidding me. The next morning I looked at her and the whole right side of her face drooped. I was freaked out, but I calmly send her off to school and immediately contacted our family doctor.  I was sure she had a brain tumor or some other scary abnormality in her brain.  The doc told us she had Bells’ Palsy. A temporary “miss-wiring” of the facial nerve,  often caused by an infection of some kind in the body.  In most cases this disappears on its own, some cases need further treatment, and in very rare cases the nerve is permanently non functioning.
 Phew, we got away good there, within a day or 10 all was well and life went on as normal.
 Since my girl is on the tiny side, we thought it might be nice for her to start doing Karate, to get her a little stronger and it was a great way to get her involved in sports too. She seemed to enjoy it and it went well ….for a few months. One day, all of a sudden boom, she had a knee the size of a football. She complained of pain. At first I was a little upset with her, for I thought she was playing me. She wasn’t injured, she didn’t fall, never bumped it, there were no bruises, so; suck it up and stop whining.
  Soon I realized that a big, fat, warm, swollen knee was not something you could fake. We went to see our family doctor again and that is when all the testing began.
To be continued!

Sunday, October 17, 2010

Let me introduce you

Oh how I love my children. I think they are the most precious thing here on earth to me. They can be a pain and sometimes I wonder where the nastiness comes from, but hey, puberty…puberty and probably a bit of genetics. Pretty sure I drove my parents crazy at times too. Sometimes it’s just convenient to forget about that!
One girl child and one boy child. Before we started a family I always said that I’d keep trying until I had at least one of each. My husband took that to heart and gave me just that. He’s very practical! Actually, my biggest wish in life has always been to become a mom. Hence my biggest fear was to not be able to have children. I feel truly blessed to have been able to bring my two babies in to this world. Now the trick is to love them, nourish them and educate them. Prepare them for the world; make them strong and independent individuals who are caring and respectful to themselves and the world around them.
That is a quest all by itself. So far it has taken me places I never thought I’d go! But I like a challenge and enjoy the road that I’m traveling!  
My girl child was diagnosed with Juvenile Arthritis just about 5 years ago. It took about 6 months before she got her diagnoses so she (and we all as a family) has been dealing with this with going on 6 years now. She is now 13 and a half (do not underestimate the importance of that extra half year!). It has been quite the ride and lately “things” seem to be spiraling out of control and seem harder to manage then they were before.
I’m a positive person and don’t like it when external factors can influence my state of mind, but I have to admit that it is tough at the moment. That is basically why I started this bog, so I can get rid of my frustration and in the mean time maybe educate people about Juvenile Arthritis a little bit.
Hope to start sharing my girl’s story and am looking forward to feedback, questions or suggestions! As far as the title of my blog; my daughter is the one with the disease, but my whole family is affected by it!
That’s all for my first post, will be continued!