The Final Countdown!

     Wow, what a great Christmas we had with our little family!

     We were a little bummed that our first day of the holidays had to be spend in the hospital for another treatment, but we made a fun day out of it. My son was able to join us because of it so that made it kind of nice! My girl was kind of excited to show her brother the whole procedure and he was eager to find out what this whole iv thing was all about. The weather gods were kind to us and despite the fact that it is winter, our drive was very pleasant.  So, looking back on it, it wasn’t bad at all!

    

  Christmas was nice and we were all spoiled rotten. I have to say, whether it is due to the iv or due to the break, my girl has a LOT more energy! (Even to the point where I have to calm her down, she’s slightly hyper, like she’s on a constant sugar rush!) It’s nice to see and definitely a much better result than last month. Gives me hope again!

     Today I got a phone call from our rheumatologist. Just to check up on how my girl was doing. I realize that’s her job, but it felt really great to be able to “debrief” and discus some of our worries. We are totally blessed with all the care that our daughter receives. All I could wish for now is that she would actually start to feel better! I slowly see a difference, hope she’ll start noticing it soon too!

      Next step is to get her school work “back “on track. Not that it is really that bad, but I want to prevent it from becoming an issue. Right after the holidays I have an appointment with her teachers and we’ll see what

comes out of that! Then; next appointment on the 21^st of January. Going to be a busy one; first an iv treatment, followed by a visit with her rheumatologist and ended off with an MRI of her knee. (sigh…have to get up at 5 am that day….ah well, at least we can get it all done in one day!)

      Probably my last post for 2010. Wish you all a fantastic 2011, may it be your best year ever!

     It has been quite the year for us, that's mainly why I started this blog. Thank you for reading and visiting. Don't be afraid to leave a comment, I appreciate your feedback!   

'T Is The Season!

     Never a dull moment in my house let me tell you!  Getting pretty close to Christmas, a few more sleeps and then we will get a bit of a break.

     Have to say I’m ready for it, was quite the eventful few weeks again.

After my girl was finally over her cold, the next thing came along. Terrible back pain.  She couldn’t sleep, couldn’t focus, was basically just getting through the days. She stuck it out for a day and a half at school, but I had to pick her up for she couldn’t handle it anymore. The rest of the week she stayed home. Took her to see our physician and he prescribed her pain medication and physiotherapy. I’ve never been a big fan of pain medication but it was inevitable at this point. It gave her the chance to relax her muscles and in combination with the massages she finally got some relief.  She made it back to school for a four day week and at the end of that week her ankle was flared up again. It definitely is time for a break!

     Her missing out so much school is starting to affect her grades. When she is able to attend school she has so much catching up to do that it seems she never gets a break. I’m currently looking in to some options we may have to relief her from some of the burden that this is putting on her shoulders. Stress is definitely not helping her and her main focus at the moment should be her physical health. On the other hand, I don’t want to ruin her chances for her future plans, when it comes to qualifications for potential post high school courses. Luckily we still have a few years to go, and hopefully by then this will all be a thing from the past!

     Now we have only 3 more days of school left. The first day of the break we’re off to Calgary for another IV and after that……Yes, Christmas! Lights, loved ones, presents, good food and good company, bring it on!

Warm winter wishes from my house to yours!

HO HO HO

     Well, just when you think some quiet times are laying ahead….My girl didn’t get the boost I expected her to get from the iv. She developed a nasty cough over the weekend. With her immune system down and her treatment for TB we couldn’t take any risks, so off to Calgary we went again. Some blood work was done, throat swap and more x-rays. Luckily we got to see her rheumatologist too, so that was helpful! We were send home with the message that no news was good news. The cough and the cold stuck around for quite a while, but no further consequences. Yay, now we are really good for another month. Just before Christmas we have our next appointment. In the mean time, my girl seems to be doing a little better now. More energy and better sleeps.

 

     Went to get my tattoo touched up today, can’t wait for it to be healed and have it there forever! Never thought such a tiny little something could change my mood and attitude in such a positive way! Have had lots of great comments on it and it’s nice to explain the what and why!

     Now focus on Christmas! The tree is ready to be decorated, going to do that tomorrow! Falalalala!

Drip

     Just came back from another visit to the Children’s Hospital. My daughter was up for another treatment. I’m totally okay with the 2 hour drive, usually I crank up the tunes and we’re there before we know it. Not in the winter though, and winter hit hard and fast this year. Hate it. Have to get up extra early to check the road conditions  and the weather forecast and then decide weather or not it’s safe enough to drive. For someone who likes to plan everything, these last minute decisions are hard to make. But anyway, I made the executive decision that it was safe enough to drive, so off we went. 

     Another prednisone iv. She was prepped and the iv went in. From there it’s just a two hour wait. Luckily there were some nice crafts for her to do while she waited (Can’t be to specific about them because they may end up as Christmas gifts!)

     Her specialist came in during the treatment; she examined my girl, what saved us another trip to the clinic 5 days from now. With this kind of weather that was a big relief. Next appointment is set for next month. Hope Winter will be kind to us!

     Not a big deal this treatment but I can’t say my daughter is in a very positive state of mind at the moment. Too much going on. School is demanding, she misses a lot, struggles to get through the day and always tries to keep a smile on her face. I don’t think any of her peers or her teachers realize what a struggle it is for her.  She doesn’t want to be treated differently in any way and usually she takes on more than she should. I guess  having to take all these meds every day, giving yourself injections twice a week and now iv’s once a month and not really seeing results don’t help either….

     I've learned that after every valley there is another peak. Let’s hope this peak is just around the corner!

looking for the beauty

     As a mom you it is hard to see your child not being well. You wish you could take over the pain, do some of the tests, take some of the needles and share some of the stress. Makes you feel helpless and frustrated and wish that sometimes you could do a little more than just being supportive.

     That’s why I decided to get a tattoo with and for my daughter. To represent how proud I am of her and how I wish I could do more for her. I chose to take the logo of the Arthritis Society, u cute little birdy. It represents more than my girl’s condition; her name is the name of a bird (in Dutch) and we also had a little bird on her birth announcement. I got it done in my favorite color; turquoise.

     So, I had set up an appointment with a tattoo artist ( Trevor Whelen) and kept it a secret for my girl. The day came and after school I picked up my girl. On our way to the tattoo studio I told her what the plan was and she couldn’t believe it. She had never thought I would ever get a tattoo. We went for supper first and had a great time chatting away, we were both quite excited about what was to come!I gave my camera to my daughter so she could take pictures while I got my tattoo.  I have to say I was a little anxious but truly, it wasn’t bad at all! (Thank you Trevor, for doing such a great job!)

prepping for my tattoo!

Now  it’s sitting there, that cute little birdy on my shoulder. Forever showing how proud I am of my daughter and Now how I wish sometimes I can do more for her.( And just to be clear, I explained to my son that this was for him too because we all deal with this as a family, it’s just my daughter who has the condition). This beautiful little piece of art also reminds me of the fact that there is always something beautiful to be found in everything, as long as you keep your eyes and your mind open for it!

still healing up a little bit, but this is it!

  

Worried Little Soul

     Sometimes we forget about what goes on around us because we are too focused on that one thing that is “in our way”.

     I remember the time where my daughter was just being diagnosed. We had many medical appointments where the whole family was involved. My husband, my son, my girl and myself , we were all in this together. It was in the summer when this all took place.

     In September the kids went back to school, all excited about what the new year had to offer. With the annual Terry Fox run coming up, the kids started collecting pledges and in school discussing the life of Terry Fox.

     That’s when I noticed my bubbly, happy, positive son started to change. He was quiet, moody and had trouble sleeping. Many nights he came up from his room, in tears. I would ask him what was wrong but he couldn’t tell me.  He had always been a strange sleeper, sleepwalking and all, but he’d never done this before. It lasted a few weeks and I started to really worry about it.

     Finally we sat down one night and it all came out.

He told me he had seen a video about terry Fox at school a while ago. Terry Fox was a good guy, he had accomplished a lot. He also, like his sister, had a sick knee. He lost his leg and eventually he died.

All this time my boy had worried about his sister dying. To him it had all made sense. If you’re knee is sick you can die from it.

     My poor little man had carried this with him for all these weeks. We don’t always know what goes on in these little minds and sometimes we forget that what makes sense to us may need some further explanation to our little people.

     It taught me to always be very clear and open about what was going on and answer all questions my kids had to the best of my ability. It also taught me what a caring, understanding and loving character my son has. Still hurts my heart when I think about the big worries my little boy had. This once again showed me that My daughter’s Arthritis truly is a Family Affair.

up to the present

     So, every 6 months a visit to the ophthalmologist, every 6/8 weeks blood work that needs to be done, flu shot every year, about every 4 months a visit with the pediatric rheumatologist and a whole load of pills every day. A lot of effort, but manageable. We were able to (with a few changes in medication here and there) keep her going for quite a while. In the mean time, some concerns about her growth came about and the doc decided to do some more testing, to absolutely rule out everything.  Another barium swallow…ugh…that was another tricky one. No results though. Her knees were bugging her again so another steroid injections was done. This time, the medasalom  (sp?) a drug that should help her relax and would make her forget about the procedure, had the opposite effect and made it a horrible experience for her. Thankfully the swelling in her joints went away for a while.

     Then, in November 2009 her knee started flaring again. Off to the doc we went. More changes in medication and she was also put on prednisone.  My daughter had a big trip coming up with her school. I wanted her to be fit for that. We tried everything but a few weeks before her trip her knees were humongous again. Doc decided we should probably drain them again, before her trip. And so we did. It went a little better than the last time, but still no fun. She went on her trip to Europe, with a bag full of pills and a pile of paperwork that would enable her to travel from country to country without problems. It was a trip of a lifetime, but my girl had a hard time keeping up. Thankfully she was so tiny, lots of piggy backs were given to her!

     Coming home, things did not improve. She was getting more pain and emotionally it was straining too. She was not able to participate in many after school sport events, what made her feel left out and unable. Constantly fighting to make it through the week and crashing in the weekend. After another visit with her rheumatologist we found out that 12 joints were affected now. Time for yet another approach; next step would be a “biologic”. This would totally knock out her immune system and she had to start wearing a medical alert bracelet. Before we could start with these new drugs she had to be screened for any pre existing conditions, which potentially could resurface once her immune system was suppressed. This was in the summer and my girl had decided that she wanted to get a little stronger so she would be able to participate in the sports teams in the new school year. Off to the gym we went, were she started exercising and trying to build some endurance.  Went well for a few weeks, then she got another major flare.

      In the mean time she had lung pictures taken and had a mantoux test done. Mantoux test came back negative, but the lung pictures showed some tiny spots. These spots could be little calcifications that can occur after being exposed to TB. Sigh…more delay before we could start the new drugs.  A visit to a contagious disease specialist was made. Another mantoux test was ordered and this time it came back positive. About 90% of all people will be exposed to TB at some point in their lives. Most of the time it stays dormant but since my daughter had to start with this immune suppressant drug, we could not take any risks and she had to be treated for TB. 9 months of pills. Added to her other pills…she’s on about 12 pills a day, each day, every day. Anyway, she had to be on her TB pills for at least 1 month before she could start her new drug.  

A month passed and the new drug was ordered. It’s a very expensive drug and I am lucky that my benefits will cover most of the cost. It is about $200 per 25mg injection. She needs 30 mg a week, so that’s quite the investment. A nurse came to teach her how to inject herself. Pretty scary stuff, but she did it and does it every week, all by herself, what makes me very proud of her.   

     After about 6 weeks we didn’t see results and went back to her doc. My girl by this time had a lot of pain, had days were she couldn’t walk without crutches and had no energy. She had to miss school and was starting to lose her spunk. Couldn’t sleep and if she did fall asleep, she’d wake up from pain in her back again. She was physically and mentally exhausted.  It’s a lot to deal with for a 13 year old. Sometimes it’s just too much for her. Doc agreed that we needed to do something, so after digging and examining and weighing all the options, she decided a prednisone IV may help. My girl had an enormous dose of steroids pumped in her body. Most of her joints are effected at the moment, I believe her hips and her shoulders are the only “clean” ones. The Prednisone iv seem to give her some energy and we are going to have to do a few more of those in the near future.

     So this is where we are now, next week I’ll take her to the children’s hospital again, so she can have another iv and hopefully we are at the end of our downwards spiral now, it’s time for some better times!

I’m also very proud of her for joining the volleyball team this year and playing a whole season! Keep going strong, girl, basketball is next!

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!

Label

     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!

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!

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!

Laeta