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!