A year and a half ago our daughter was diagnosed with psoriatic arthritis. Her pain and psoriasis started about a year before that but between misdiagnosis and chalking things up to growing pains, we had no idea JIA was even a thing. It all came to a head after a hike when her knee ballooned and she couldn’t walk. We were sent away from multiple appointments with not much more than a shrug and some crutches and told to rest for 6 weeks. But when your kid goes from extremely active to couch-bound with no cause of injury, you just can’t accept no explanation at all.

I researched for hours.

It clicked that her elbow pain from the previous winter was related and not “nothing” as we had been told. Her diagnosis of “only dandruff” the summer before was, in fact, psoriasis as I had initially thought. With the information I had found, I brought Addie to the ER for one of the hardest days she’s had to go through in her arthritis journey. I asked the doctors there to prove me wrong; to run tests, to rule out infection and other speculations. Over 7 hours she had her blood taken twice, and her knee drained and imaged. We ended up in paeds with her pediatrician on the phone to BCCH Rheumatology and a referral.

The next steps were chaotic.

We are a 12 hour drive from Vancouver, and it seems to be a foreign concept that anyone lives outside of the lower mainland. We were given 3 days notice to get to BCCH for her appointment. It wasn’t easy, but we made it. Thankfully we had friends who knew of different charities like Friends of Children’s and Variety that helped with accommodations and fuel reimbursement.  Unfortunately, this all happened at the beginning of COVID, so many of the usual options were not available at that time. The doctors were so thorough, they could see her knee had actually been affected for quite some time due to muscle loss from favoring her leg and her elbow had reduced mobility and swelling that other doctors didn’t see.

Addie was diagnosed with psoriatic arthritis (subtype oligoarticular) which we had anticipated. She was sent for x-rays that day. Due to the swelling in her elbow and knee they recommended steroid injections into her joints to prevent long-term joint damage. This meant another trip down to Vancouver the following week. Although the injection procedure didn’t go smoothly (she was stronger than the sedative), they worked wonderfully and she had a lot of relief. We are thankfully able to see BCCH Rheumatology every 3 months here in Prince George at their outreach clinic which takes an amazing amount of stress away.

As for treatment, we started with naproxen, then moved to oral methotrexate, but both of those caused her serious stomach upset and reduced appetite resulting in weight loss. She is now taking Celebrex and weekly methotrexate injections paired with folic acid and Betaderm cream for her psoriasis.

I had to learn how to give her injections at home and when we started she still had a strong needle phobia. It took me 3 months to be able to give her an injection without my hands shaking and crying afterwards. A lot of the procedures along the journey can cause trauma for both the child and parents. Because our journey started during COVID-19, that meant only one parent could be with her at any appointment.

It’s a heavy load to carry for everyone.

Her arthritis has improved greatly, but I don’t think there has been a day in the last two years that she hasn’t been in pain. It’s always up and down, changing with the weather, or for no reason at all.

Part of the journey that is hard to understand without experiencing it is how big of a role grief plays. For the child, for the parents, and even for the siblings. You all have to grieve what was, you have to grieve your future plans and dreams because it all looks different. Every plan you make, vacation, walk, outing, you have to plan differently. Sometimes even canceling altogether and hope that maybe next year (or the year after that) there will be less pain.

Every blood draw, injection, and cream application your heart falls into the pit of your stomach because it’s something you can’t fix or help. You fall apart completely when you hold your kid as they cry about how unfair it is because they have to quit team sports, cancel trips, and pay dearly for simple things like sleepovers that result in days of fatigue.

You’ll answer yes one thousand times that you would take it away from them if you could as they wrestle with “why them.” Thankfully there are a lot of support groups like Cassie + Friends and Facebook groups for parents to connect, vent, and give encouragement because it can be a lonely road.