"Nobody seemed to grasp that our 4 year old literally couldn't walk any further than 5 minutes."
Lola was diagnosed with extended oligoarthritis in September 2019 when she was 4 years old. She first started having issues in February that year when she woke up one morning with a limp. She hadn't fallen over and there was no obvious injury or swelling.
When it didn’t improve after a few days, we got in touch with our GP who thought it was just stiff joints from the antibiotics she was on the week before for an ear infection. We had never heard of such a thing.
She kept getting worse and dragging her left leg behind her. We got back in touch with the GP who then said it was because she was really hypermobile and has knock knees so they referred her for physiotherapy. She did all her exercises everyday but when it came to walking she couldn’t walk for more than 5 minutes. She was discharged from physiotherapy and told to carry on with her exercises. Nobody seemed to grasp that our 4 year old literally couldn't walk any further than 5 minutes. It got to the point where we had to make her 2 year old sister walk so Lola could go in the pushchair instead of her.
In July, we went back to the GP again as Lola’s left ankle swelled overnight. He said he couldn't see any swelling even though there was a massive size difference between her ankles. He came to the conclusion she just had 'muscly ankles' which again sounded ridiculous to us. By August, Lola’s left ankle was still swollen but it was also feeling really warm so we called 111 and we were advised to go to A&E. Her blood test was normal so they referred her to a paediatric consultant who we saw the following week.
He said instantly that no four-year old’s ankle should be that size and that there is definitely something not right. We finally felt like somebody was listening to us. The ultrasound showed Lola had fluid in both ankles, both knees and around all the tiny joints in her feet.
She was then referred to rheumatology who we saw at the end of September. We finally got a diagnosis a whole 7 months after her symptoms began.
Lola started on oral steroids and was booked in for 4 steroid injections followed by the plan to start methotrexate injections after that. It happened to be the day after her 5th birthday that the steroid injections were booked for. When they assessed her, they found that she had more joints affected so she ended up with 7 joint injections. A few weeks later she started methotrexate. She hated it, I hated it, we all hated it. Seeing her get so upset every week was horrific. She got on fairly well with methotrexate side-effect wise for the first few months then after that she started being sick. She had her injection every Friday and would then spend the weekend feeling sick. It felt like by the time she felt okay, it was Friday again and the whole cycle would start all over again. Even anti-sickness medication didn’t seem to help. Lola would be sick if she saw something yellow as it reminded her of methotrexate. She would also be sick if she smelled sanitizer as it smelled like the wipe that came with methotrexate.
Despite the challenges, we continued with the methotrexate. In August 2020 she had a flare and needed 5 more joint injections.
In June 2021 she started flaring again so needed oral steroids again but after nearly 2 years on methotrexate, we knew we had to make a decision to stop the sickness so agreed with the rheumatologist to stop methotrexate. We waited a few weeks to see how she was - she flared again and needed oral steroids along with starting on adalimumab. This medication agreed with Lola a lot more. We have no side effects whatsoever. She says the actual injection hurts more but being fortnightly instead of weekly it is a compromise that she is managing with.
The past 3 years have been a lot to deal with for all of us. Lola’s behaviour spiralled when she was on methotrexate leading to meltdowns. It was horrible to see her like this as she used to be the happiest, craziest little girl ever before.
Her big brother bore the brunt of it yet usually at the end of one of her meltdowns it would be him who she would go and cuddle. We spoke to a rheumatology nurse when things got really bad and it was affecting Lola’s mental health severely. The rheumatology nurse referred her to their psychologist and assured us this was quite normal for kids in their care which put me at ease a bit. She has just finished 6 months of psychology appointments and is like a different child. She will take herself off and use her techniques. She has learnt to calm herself down if she feels angry and is back to her old self again. Lola complains of pain daily, her ankles hurt her constantly but she carries on now with a smile on her face. She has recently signed up to gymnastics to try and help with her balance. She absolutely loves it and has earned her first gymnastics badge already!
It feels like Lola's journey is far from over yet but we are hopeful that one day she will go into remission and be able to be free of medications.
You can find out more about Juvenile Idiopathic Arthritis here.
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.