Juvenile Idiopathic Arthritis and Us

My son Travis and I.

I’m slightly overwhelmed with my sons recent diagnosis of Juvenile Idiopathic Arthritis (JIA for short). On Friday we entered yet another doctor’s appointment with a new specialist in Toronto. Our expectations of getting a diagnosis were low from how many times we have seen other doctors in the past. Once the specialist gave my son his diagnosis I was the weird mother who laughed, not my best moment because this was pretty serious. I laughed because after three years hearing multiple doctors saying the ugly c word or surgery or the common we have no idea left me feeling frazzled. Hearing the words JIA had me floored.

This all started when we noticed Travis’s knee swelling to softball size. In the mornings he would limp heavily. His knee became so stiff that he could not bend it. We booked a doctor’s appointment with hopes that we could find out instantly what was causing his discomfort. What we did not know was this was the beginning of a long process of multiple doctors and appointments. Our life became speculation and misunderstandings of what was happening inside my sons body. His life was already complicated with autism and with this issue we threw normal out the window.

Trying to get this diagnosis has taken time out of Travis’s schedule and time with his studies. Being eight years old and autistic these are some of the most important elements in his life. We used to be able to count on these two simple routines to follow. With every doctor’s appointment made to get his diagnosis we had extra tasks to follow. We had to prepare Travis mentally in order to travel and be prepared for what will happen in the appointments. Our parental stress came from booking, missing work, and navigating what each specialist did. Often after these appointments we were left with more questions than answers as to what was going on with my son. This last appointment I did not expect to get the diagnosis that we so desperately wanted.

We have been to so many doctors that this last one was finally the one that clicked well with Travis. No longer having to drive to London, Ontario, for a full day of driving we ended up in Toronto. This was a great relief as I finally had time to think about where we are headed with my sons life. My thoughts pondered to how his quality of life will be affected if it was the great scary word of cancer given to us by the last specialist. Although relieved that it is not in fact cancer, I am floored of hearing JIA. This diagnosis was unexpected. When she said the words Travis has Juvenile Idiopathic Arthritis my mind went blank, and I burst out laughing.

I’m glad the doctor was not judgmental on how terrible I acted at that moment. She gave me a minute to adjust my behaviour accordingly and led with statistics. One in every thousand child has JIA in Canada. This equates to ten thousand Canadian children and teens. What did it mean my son was another part of statistics. Then she said this is a chronic condition he will probably have his entire life. She then stated he will need to go attend Sick Kids Toronto Hospital for treatment. She mentioned steroid injections,
physiotherapy, and extensive blood test. When he gets this done he will have to be under anesthesia, I’m pretty sure my mom brain blanked after this.

I’ve given myself a couple days to understand the meaning of all of this. It’s a great amount to take in as a parent. When you have children the one fear that is commonly held is their quality of life will one day be compromised, and that as a parent you cannot give them the best. Taking the good out of the bad is that we can get him treatment and support Travis fully. I can raise awareness with more that I learn. Join communities with other parents who are dealing with the same disease and build better understanding of JIA. I still have my Travis and it is my duty as his mother to give him the full support and never give up hope for his future.

Written by Ali Johnson