"This disease is so unpredictable and it can rear its ugly head at any time in any joint so we’re always worrying when the next flare will come and how bad it will be."
When Mia was 3, she started complaining that her hands hurt and she was limping a little. We noticed swelling in her knee and ankle. We assumed that she had fallen over and hurt herself, she’s always been so clumsy.
A few days later, one morning we heard screaming from her room. She could not walk. I will never forget that moment. We took her straight to A&E and after a full day of tests and seeing many different doctors they concluded it was Synovitis but referred us to Rheumatology just to be sure.
Over the next few weeks Mia got worse and eventually could not open the fingers from her right hand. Her elbow was permanently bent and she could not walk properly as her knee was bent and her ankle was very stiff. We had to carry her downstairs every morning until her joints began to ease gradually through the day. We would watch her attempt to play with her toys with only one hand. She struggled to get up and down from the floor. It was so hard to watch your usually very active child find even the smallest of things difficult.
At the Rheumatology appointment, Mia was diagnosed with Polyarticular JIA. It was devastating but also a relief as we finally had answers. She had to be admitted to hospital and given steroids intravenously over 3 days and then given joint injections under general anaesthetic.
The coming months and years would prove to be a real challenge for both Mia and us as a family. She has to take immunosuppressants in the form of weekly injections of Methotrexate to control the disease.
We tried taking her off her medication after 2 years of being flare free, but within two months of being off the drugs, she had an almighty flare which then took 6 months to get under control. She also developed inflammation in her eyes (Uveitis) which can lead to blindness if not controlled. She now takes Humira every two weeks and has been flare free for almost two years.
This disease is so unpredictable and it can rear its ugly head at any time in any joint so we’re always worrying when the next flare will come and how bad it will be.
Mia is almost 8 now, she’s had to accept that she needs regular injections and bloods which is not easy for a child with a needle phobia. She’s also realised that she can’t always keep up with her friends which can upset her a lot. She still hates her injections and until recently we’ve had to hold her down to do it, but she deals with them a bit better now. As her parents, that’s all we can ask; for her to be happy, healthy and active and she certainly is at the moment.
For more information about the different types of Juvenile Idiopathic Arthritis, please see our About JIA page.