#KidsCantWait: Simon’s Journey

The Early Signs

Simon’s journey began when he was around 10; he has always been an active, strong-willed child. He never complained when falling or having some scratches for his rough, playful adventures, but he wasn’t happy with our long walks. As a family, we love hiking, which seemed to upset him. At first, he complained about having pain when having a challenging trail, we thought those were growing pains and asked our family doctor about it. He was fine while fencing (his favourite sport ever), but walking and running were painful for him, and he seemed to be more and more tired after training. Our doctor suggested warm packs when in pain, alluding to normal growing pains. A few months later, he started complaining about pain in his lower back, especially those days when fencing competitions were approaching and the level of training was high. Again, we went to the doctor, x-rays and blood tests were done, and nothing significant came, a referral to the Urologist was made, but we were waiting for almost a year. Andres (Simon’s dad) observed one day that he was walking “funny” when picking him up from training, he was often so tired that it started to be a concern, but again, out of our ignorance at that time, we thought as the doctor said, that it was all cause of growing. Out of our concern, we started to make some notes and write down when he complained or was walking “funny” and using cold packs and hot baths when needed.

A Search for Answers

When he started middle school in September 2024, he was walking to and from school. This school was a little bit further than his previous one. When arriving home, he was always exhausted and with no desire to do any other activity, including his “precious fencing.” He was sleepy and started to complain about his pain to the point of crying—Simon never cries— for us, it was shocking and concerning because it was extremely unusual to see him in such discomfort. The next day, he wasn’t even able to get off his bed, when he tried to go down the stairs on his own (he refused help as a good, strong-willed child, lol) he started crying, we went to the Children’s Hospital emergency room here in Winnipeg. We waited for more than 6 hours to be seen, and they took x-rays, gave him medicine for the pain, and again, we were sent home with the advice that those were normal growing pains, and he was a little bit overreacting (our kid who never cries was overreacting not being able to even walk and required a wheelchair). I regret not advocating for my little boy that day.

We drove him to school the next day, and the school called us back asking to pick him up because he was in so much pain that he was unable to stand or even move, we ran to emergency again, and more x-rays were done, he was having bowel problems, and the team at the Children’s Hospital said that that was the reason of the lower back pain, the ER doctor suggested an enema, and after it was done, they sent us home, even though he was still in pain.

Living with an ERA Diagnosis

At that point, we were all frustrated and anxious not knowing what was happening. He didn’t want to go anymore to the doctor, but that night, he woke up with a fever and a rash. His knees were swollen, and his hips were in so much pain that even wearing his pajamas was painful. We ran again to the Children’s Hospital, and they decided to do more blood work, x-rays, and ultrasounds. Doctors were coming and going and 12 hours later, a pediatrician came by to explain the results which showed inflammation, and that a rheumatologist was coming to see him. That day, we met Dr. Lim, our lovely Rheumatologist; as soon as she saw him walking and saw the results, she mentioned to us the high possibility of Simon having JIA. More blood work and an MRI needed to be done. We were sent home with the referral to see her a few days later and painkillers and anti-inflammatory meds.

He was at home for several days without energy (now we know it was a flare-up) He was in so much pain that he needed to be assisted in dressing, moving around the house, and even eating.

The MRI showed damage to his hips and lower back, his rheumatic factor came negative, and his bowel problems and rashes were not isolated issues. Those were part of his symptoms. We often think about how important it is to tell the doctors everything, no matter how small we think it is. Those things may be a hint to the doctors to help them figure out exactly what is happening. That day, in late October 2024, Simon was diagnosed with Enthesitis Related Arthritis (ERA) – a form of Juvenile Arthritis – and after a couple of weeks and more blood tests, he started his treatment with Sulfasalazine and Celecoxib. He was still in pain and unable to go to school for a couple of weeks.

The hardest thing for him was being unable to go to fencing and feeling isolated and unsure of what to expect. With the help of our wonderful doctor and her team, at the following appointment, we received information on how to connect with other families, resources, and new medicines available for treating Simon’s ERA better. We connected with Cassie + Friends through social media and got the opportunity to learn more about JIA with other parents on Facebook, through Zoom meetings, and even on the webpage, how to advocate for Simon, and how to help him navigate his new reality. He is now on Abrilada plus his pills, and it seems to be helping; he went back to fencing, and even though it is not the same—we still need to drive him to and from school, helping to understand how to manage the pain—he enjoys being active and doing what he loves.

Moving Forward with Hope

It has been quite a journey. We are learning how to navigate the medical system, how to approach doctors, nurses, and insurance, and what triggers his pain. Our family is adapting slowly in a sense we feel that it is a new world, sometimes it is constantly grieving and learning how to have joy even when he is in pain. Changing our schedules, trying to make our changes smoothly, and helping a pre-teen navigate a difficult painful path. We still have a lot of appointments with gastroenterologists, urologists, eye doctors, and of course our Rheumatologist. We are pretty new in this, only a few months have passed after his diagnosis but one thing we’ve learned is to ask questions no matter how silly they seem to be, to let our kid decide when to tell or not to tell if he is in pain—often I ask him to be vocal and speak up so everyone will understand better—but everyone is different, today he is allowing us to share and other days he will ask not even to be asked if he is in pain, and that is okay. We still go for hikes but saving energy for Fencing is our goal, it is what makes him smile every day. After a month of being away from his training sessions he is starting to go back even to competitions and recently he got a bronze medal in a national competition. We are doing our best to enjoy living day by day and let him dream regardless of own bias and fears.