#KidsCantWait: Kylie’s Journey

Kylie’s Journey to Diagnosis

Kylie took a bit of a tumble at a gymnastics birthday party and hurt her ankle when she was five. At the time it didn’t appear to be very serious and we continued on with the party. The next day her ankle became quite swollen so we brought her in to see a GP and got X-rays. They thought there was a fracture so she got a cast. A week later her knee became very swollen, stiff and unable to fully flex or extend. This lasted for about 6 months without any explanation as to why this was happening.

The six months following the initial “injury” were a major struggle to get answers. Repeated doctors’ appointments trying to get answers, being told Kylie was faking it. Kylie experienced a great deal of pain which disrupted her sleep, and this caused a lot of stress on the family as we advocated on her behalf. We looked for alternate ways to seek answers and sought out support from physiotherapists while we fought to get the diagnostic imaging needed to prove there was something wrong.

Living with JIA

After we got an MRI of Kylie’s knee which showed significant findings, we finally got referred to the rheumatology clinic at the Stollery. During our first visit, we finally got the answers we were looking for which led to her diagnosis of JIA in her knee and ankle. Kylie’s treatment began shortly after and she fortunately began to see positive results following a steroid injection.

Shortly after her diagnosis, we also discovered that Kylie’s JIA brought in uveitis and she began eye drops four times a day. This caused some challenges as Kylie was in kindergarten and we needed to rely on support from her teacher to get her medicated drops done while at school. We were incredibly grateful for the support we received from Kylie’s teacher and care team during this stage!

Finding Community and Moving Forward

Kylie was diagnosed in 2017 and at that time, we were provided a booklet which gave information about JIA and how to support her. We didn’t learn about Cassie + Friends until a few years later when a friend of mine through work made a post on social media about her daughter’s diagnosis with JIA. We messaged back and forth sharing our experiences and that’s when she told me about Cassie + Friends and encouraged us to participate in the Edmonton Run/Walk event. We met many families at the event and shared our experiences and it felt so great to have a connection with others going through the same experiences.

After chatting with my friend, I found information on the C + F website and began attending webinars for support with injections, and more! Kylie has also connected with a youth mentor with Cassie + Friends this year which has been such a positive impact on her. I have joined the “Producing an Arthritis Value-Framework with Economic Evidence“, or PAVE, parent research group and have learned so much from the other parents as we worked together to contribute to this research project. It makes me excited to think of the potential improvements that will be made as a result of this work and how we can help other families affected by JIA.

Lisa’s Advice’s For Families

My first piece of advice would be to immerse themselves in the many valuable resources and supports Cassie + Friends offer. Seek out ways to connect with other families to talk more about what recommendations they have and just feel like you aren’t alone! I would take notes during doctors appointments and start a journal of symptoms or questions in between appointments to help me keep track of everything. It’s very easy to forget or lose track of details.