A mother describes her child's experience with juvenile arthritis

Abstract

At 14 months, my son Aiden began having frequent fevers and developed an intermittent rash all over his body. He began having excruciating neck pain and was unable to walk. He was referred to Professor Don Roberton at the Women's and Children's Hospital, Adelaide, who diagnosed systemic onset juvenile idiopathic arthritis (JIA). Anti-inflammatories were commenced but with little improvement over a period of months. Aiden was hospitalised and received infusions of methylprednisolone, IVIG, oral prednisolone and methotrexate. The side effects included a suppressed immune system and Cushing's syndrome. The JIA was never really under control. Over the next few years, Aiden had trials on different monoclonal antibodies. The decision to try these required us to make difficult decisions on Aiden's behalf, based on trial data and limited information. Each drug had side effects, but Aiden was about to start school and we wanted him to have a decent quality of life and the opportunity to socialise with his school friends, which is why we decided to try these new drugs. For a time, the JIA was better controlled, but Aiden was hospitalised for joint injections and arthroscopies. He missed a lot of school, was unable to participate in physical activity and used a wheelchair/chairlift frequently. Over the years, Aiden also required other allied therapies such as hydrotherapy, physiotherapy, occupational therapy, ophthalmology and podiatry. Many adjustments needed to be made both at school and at home to ensure his environment was easily accessible to him. The Local Council Carers’ Support ensured we had access to respite, to refresh our emotional health. A local support group provided information and opportunities to meet with other JIA families. Dr Christina Boros was now looking after Aiden and we asked her about a new monoclonal antibody called tocilizumab we heard of through a parent support group. It had not yet been approved in Australia for use in children, but clinical trials were in progress. Dr Boros successfully applied for approval for Aiden. Aiden noticed a difference within days of his first fortnightly infusion. His pain decreased, mobility improved and he had no breakthrough rashes/fevers. It seemed too good to be true and we were realistic about our expectations for the future, but this was a great start. Whilst it isn't a cure and we never anticipated it would be, it has vastly improved Aiden's life. His absence from school due to illness and hospitalisations is minimised. He no longer uses the wheelchair at all. His fatigue has decreased and he is able to participate in life much more fully than ever before and this has continued to be the case almost 4 years later. ‘SHINY NEW’ I long for days where joy is near My son he beckons, lend me your ear Why is it mum, when I'm awake My body seems to ache and ache? And in his prayers he asks of God Please write a letter, say I'm not odd Why don't you take this pain way? I know then I could play all day. And in my dreams, his words sound through My life and his are shiny new All hopes and dreams fade to grey When I awake, begin the day. I see him smile, his face so dear The pain surrenders, no more fear Gently whispers, ‘Mum I love you’ No greater words, dreams do come true.