Wednesday, August 30, 2017

Alagille, Noonan, and then JIA...

When you think of arthritis, what comes to mind is something that afflicts older people. A natural part of the aging process I guess. My father had polio at a very young age and I grew up hearing about how sore he always was: ''my arthritis'' he would say, rubbing Tiger Balm or having my mom apply a sore muscle patch on his back!  I can close my eyes and still remember the smell... He claimed he could predict the weather forecast through his body. Having suffered from migraines until childbirth, I can actually believe our body senses the changes in barometric pressure.

My Dear Daughter was a late walker and I remember well her grand-papa being worried because she never crawled on her knees. When she did decide to move, it was commando style crawling. We used to jokingly say she was lazy: she would sit on the floor, point at things and her sweet sister, older by 17 months, would service her complacently. She was the child who would go to her bedroom right after lunch, and sleep until 4h00 pm. And that much sleep never affected her bedtime routine. She was the easiest child. Looking back now, I am wondering if she did not live with pain much before she started complaining. We will never know. 
It's at the age of about 8 or 9 that she started to complain of knee pain on a regular basis, which we unfortunately mistakingly took for growing pain. And then she went through quite a growth spurt at the end of elementary school. She used to be quite active, but would constantly complain.
It took a bad turn during the summer when she was 12: I remember her being unable to move or go up the stairs. Dear Daughter having a tendency to be a wee bit dramatic, we thought at first she was acting up. It became clear she was not. After a quick visit to the paediatric orthopedist and blood work, we were quickly referred to a paediatric rheumatologist. They first suspected Lyme disease, then lupus, mentioned fibromyalgia...  What we did not know is that she had experienced her first flare.
We ended up seeing a rheumatologist in Kingston on a regular basis. Two years later, after many visits, blood work on various occasions, and a MRI, the diagnosis of Juvenile Idiopathic Arthritis (JIA) with Ankylosing Spondylitis (AS) was confirmed. It's not easy when you're 15 to see your dreams shatter. It hurts when you're 15 and you just got a diagnosis and you're crying, to see your so called friends dismiss you and think you are just trying to get attention. It's hard when you're 15 to be made fun of because all your joints are swollen and you can't move like others. It's hard to be 15 with a disease you can't forget because it hurts constantly. It consumes you, you become angry and you can't think clearly. And yes, you make mistakes.
After the process of elimination going through a course of Naproxen, then Celebrex which both did nothing, we moved on to biologics drugs with etanercept. This was not a decision we took lightly, as the risks and side effects can be quite scary.
My brave girl learned to self inject (that took courage) and did so for 8 months, with no results and inflammation creeping up into every single joint of her body.
The specialist came to the conclusion, after another MRI that the medication had done nothing to keep the inflammation at bay, and that in fact we were losing ground...
Today, my brave girl started IV infusions of infliximab. Those 2 to 3 hour long sessions are to take place every couple weeks initially, to hopefully end up at 8 weeks intervals, for as long as we can think...
We put a lot of hopes in this treatment. I want to see my girl shine and able to be herself. I wish to see this disease and the deterioration of her body kept at bay so her dreams may come true. So she can keep playing guitar, drawing, and doing the amazing things she has in mind for the future.

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