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!