“Feelings and emotions are real, and should be felt and openly discussed.”

Meet Kaese and his mom, Jennifer. Together, they have chosen to share their story of being diagnosed with JIA and the many impacts that can have on a child and family’s mental health. To read more Cassie + Friends’ Youth Mental Health Strategy, announced on National Child & Youth Mental Health Day, click here.

Let me tell you about a happy, healthy, active 11 year old boy who, instead of lacing up his soccer cleats or riding his bike with his friends, was being taken for tests and doctors appointments to try and figure out why his left knee was so swollen.

It would be almost three months before he was finally diagnosed with Juvenile Idiopathic Arthritis (JIA). Three months of not playing soccer, participating in gym, or even swimming and riding bikes with friends. Just doctor appointments, x-rays, an MRI, his knee being drained twice with no sedation, and blood work – all this without even an answer, just a swollen knee that was becoming increasingly stiff and an ankle that seemed to want to join the fun.

By the time he was finally diagnosed at the children’s hospital in London, Ontario (which is a two hour drive from my home), he had a significant limp and could not walk up or down stairs without doing one step at a time, like a newly walking toddler.

At our first appointment everyone was so nice. They diagnosed him with having Oligoarticular JIA- meaning that fewer than five joints were affected. The doctor then explained that he wanted to give him a corticosteroid injection in both his knee and ankle to help bring the swelling down and start him on naproxen pills, which he would need to take daily.The news of the injections was the last straw for my brave boy. After the experience of the draining from the orthopedic surgeon, he was not having it. Together with his doctor we decided that we would come back in a week and have the procedure done under sedation. At that time, they would drain both joints as well as give the steroid injections.

Even though we now had a diagnosis and a plan, after the trauma of the last three months, this did not set my son at ease. He didn’t trust that this procedure would not hurt, but in fact help him like the doctor promised. He was given the ok to start riding his bike and swimming so that was a positive thing for him. The next week we tried to keep his mind off of his upcoming appointment, but as the week went on he was not his normal happy self. Not only was it the needles and the draining he was worried about, he had never been ‘put to sleep’ before.

The day arrived and we headed up to the hospital. He was riddled with fear and anxiety. The staff at the hospital were amazing and the procedure went well. We were sent home with more naproxen and a follow up appointment in a month. We thought that was it, and we were excited to get this all behind us. I had already started him with a physiotherapist to try and get the strength he had lost back. Things were looking up.

At the follow up appointment we were introduced to the lovely medicine called Methotrexate. If any of you are not aware of this drug it is to be administered weekly by way of injection. It can also be given orally or by pill form, however the best way is by needle. My brave guy now trusts this doctor as the procedure helped and he even got to ‘play’ his last two games of the soccer season. So he agrees to the injection, which might I add, I have to administer.

This is when we started seeing his mental health being really affected. We let him pick the day for his injection. He chose Mondays. Methotrexate can be really hard on the body and can have some pretty awful side effects, like nausea, vomiting and tiredness the day after. He was just starting hockey season with games and practices on the weekends, so he decided he would rather be tired and not feeling well on a Tuesday at school than at hockey.

However, agreeing to having the needle and knowing it’s the best thing to do and actually getting the shot once a week are two very separate things. He was so brave every week, however as the weeks progressed we started to notice a decline in his mood starting on Fridays in anticipation of his upcoming injection. The sadness started to creep into other days with Mondays being completely anxiety ridden. He was sad, and said things like he “didn’t feel like a kid anymore”.

It was really starting to weigh on him. It broke my heart. I reached out to a member of his health care team to try and get him in to talk to someone. We did get an appointment and she was great. She gave him some strategies to help him with his anxiety, and talked a little bit about how his JIA was not his fault and there wasn’t anything he did to cause it. This appointment was over zoom as she is located two hours from us and as much as it did help, I believe had it been in person we would have got more from her knowledge.

Since then we have switched to the liquid form of Methotrexate and now the pills. This seems to have decreased the amount of days he is sad and worried. He still gets really quiet on Monday evenings leading up to medicine time, but we are doing better.

I am so happy to hear about Cassie + Friends commitment to transforming mental health service for kids with JIA. I think with every diagnosis should come with an automatic appointment with a mental health specialist to either help and support caregivers and or the patients. My son being an active 11-year when he was diagnosed could have really used the support and still could. Feelings and emotions are real, and should be felt and openly discussed.