“All I could think about was whether my little baby girl was going to be ok and everything the doctor said was a blur.”
Last summer, I noticed Hallie’s finger was swollen to the point that she couldn’t even move it.
At first, we thought she had hurt it by injuring it somehow and that the swelling would go down after a few days. She never said it was sore and it didn’t seem to bother her.
After 4 weeks, there had been no change and it was still swollen. We went to the doctor who then sent pictures to the hospital. We also went in for X-rays and blood tests and were referred to rheumatology.
Just days before our appointment with rheumatology, Hallie’s ankle had swollen too. I just knew it was connected with her finger and that something wasn’t right. Never was I expecting to be told that Hallie has Oligoarticular Juvenile Idiopathic Arthritis. I'd never heard of it before. All I could think about was whether my little baby girl was going to be ok and everything the doctor said was a blur.
Ten days later Hallie started on weekly methotrexate injections with appointments for regular blood tests too, and eye tests every 3 months to check for Uveitis. Hallie has her finger, ankle and knee and a few joints on her toes that are affected but has never complained and doesn't seem to have any pain.
She was very stiff in the mornings and liked to be carried. She even went back to using her pram. She walked on her heel with a slight limp. At around 3 months into her medication, the stiffness eased off and she was back to running around again. She has also had physiotherapy. The physiotherapist created an exercise programme to build up the strength in her leg.
However, the swelling never went down so we were then booked for steroid injections in the three main joints that were affected. A few days after that, the swelling came down slightly and she stopped walking on her heel and with a limp.
Less than 2 weeks after the steroid injections, Hallie was limping again. But at our next appointment, the rheumatologist thought that it was because she might have overdone it in the first couple of weeks after her steroid injections. We are delighted that Hallie is now walking with no limp. The doctors are happy with her movement and how much the swellings have come down for now and you wouldn’t even know she had JIA.
As hard as it is not knowing what’s going to happen, I'm so glad she hasn't had any pain and that we caught it early on so that we can get it under control. Hallie is always smiling and loves playing outside with her big sister Darcie and is definitely the boss! She does what every other 2 year old does and JIA won't stop her.
Children and young people with JIA have inflamed joints. This can sometimes be visible (such as swelling, looking red, or being warm to the touch), but can sometimes be hidden. It often causes pain and reduced mobility but, as shown in Hallie's story, not everyone with JIA will experience pain in every affected joint as everyone is different.
Sometimes, the biggest clue that a child may have JIA is that they cannot now do something that they used to be able to do - like sitting on the floor, writing, running or eating comfortably. You may notice that they will compensate - like Hallie walking on her heels, for example.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org
For mental health support and support with injections, please visit our Mental Health hub and speak to your rheumatology team.