As a parent/caregiver, you envision your children growing up happy and healthy, enjoying life to the fullest. However, life tends to chuckle at our best laid plans, and that was the case with our middle daughter, Rosalie, who was diagnosed with Polyarticular Juvenile Idiopathic Arthritis at the age of 6 in February 2022.

It started with complaints of shoulder pain with an unknown cause, which we brushed off as she was noticeably active and often accident prone. After some repeated complaints, we took her to a family member, a chiropractor, who noticed her hypermobility and recommended taking her to a pediatrician. In November of 2021, we noticed she had an extremely swollen right hand and wrist, which prompted the pediatrician to fast track a referral to Rheumatology for assessment. After multiple x-rays, ultrasounds, and physical examinations, the rheumatologist provided us with the diagnosis, noting it was primarily affecting the carpal bones in both wrists, her knees, and foot tarsals. What we had previously thought of as growing pains and typical kid aches from an active child were found to be Rosalie’s immune system attacking her joints, and the attack was ramping up.

To say that receiving a diagnosis for something we had never heard of was overwhelming is an understatement. Neither of us had much knowledge of chronic autoimmune disease, but discussions with our rheumatologist led us to learn that both parental sides were filled with it. We were suddenly juggling injections at home for a child scared of needles, concerns over being immunocompromised amidst a pandemic, and watching our daughter attempt to navigate her new normal. We didn’t know how this would affect her quite active self, as we had already seen how limited she was with her swollen wrist. She couldn’t open jars or containers on her own, refused to carry things in her right hand, preferring the crook of her elbow, and couldn’t play some sports due to pain. What else would it affect?

In our journey, we have tried various medications in an attempt to get Rosalie’s illness under control, both oral and injections. Our needle adverse daughter has been very brave, and we are all very grateful for the modern technological advancements that help reduce the fear and pain, like Emla numbing cream and her BuzzyBee vibration/icing/distraction tool. Different medications also caused side effects such as stomachaches, exhaustion, nausea, and headaches. We are in frequent communication with our rheumatology team at Children’s Hospital in Winnipeg, which is vital to continuously assess the best course of treatment. We have recently switched to a new medication, a biologic infusion, and it was a very positive experience for us all.

It is very important to maintain a strong show of support for your child during something like this, but just as important to ensure that you, the parent/caregiver, have a strong support network. This journey is not for the faint of heart, and being part of a community that understands the pain and apprehension you are feeling is invaluable. A large part of our community who “just gets it” is through Cassie + Friends. There are so many helpful resources to ease the weight you may feel of “Where do I start?” on receiving that diagnosis. The letter template in the school toolkit for teachers helped us start talking to those in Rosalie’s life about the changes going on and supports she may need going forward. We sat with Rosalie to watch the videos in the ClassRheum Hub and we all learned as a family what life with JIA can look like. We have connected with other families in the JA Canada Facebook group to glean knowledge from other parents going through similar circumstances, and we have been lucky enough to give back to the community. This looks like organizing a local Team C+F Run/Walk in Sept 2022 and helping to launch a Cassie Case Equipment Cupboard at the Children’s Hospital Rheumatology Department in Winnipeg.

As you can see, this is a journey of constant learning. We are so excited to be sharing a bit more about our journey at the upcoming session on Newly Diagnosed: What to Expect in the First 12 Months happening on Tuesday, March 28 at 4:30pm PST / 7:30pm EST. Rosalie and I hope to see you there!

Rosalie is now on her third change in treatment in 14 months as her JIA is still uncontrolled. She is just one of many kids living with JIA, choosing to find the milkshakes through the injections (a pro-tip!), and still smiling through it all. We hope for remission and will keep reaching out and bringing more attention to JIA as we walk this road.

In the meantime, here are a few tips that myself and other parents have compiled in hopes that they might be helpful to you and your family as you learn to navigate your own journey. While we never imagined we would be dealing with a chronic illness in our family, we are learning to take it one day at a time and appreciate the small victories along the way. We hope that by sharing our story, we can raise awareness about juvenile arthritis and let other families know that they are not alone.