If we had to wait for the treatment... Belle would have suffered irreversible joint damage
Belle had been an active child up to the age of three but in June 2007 she began experiencing difficulty walking whenever she woke up from a nap.
“She would be stiff and her legs would wobble when she was walking. We would call her Bambi and laugh and we didn’t think anything was wrong,” Susan said.
The laughter subsided in the autumn when Belle would refuse to get up in the morning and by September, she was crying with the effort of walking at all.
“The penny dropped that there was something seriously wrong. I got really scared and thought maybe it was a tumour on her spine. At that stage I had never heard of juvenile rheumatoid arthritis. We went to Tallaght Hospital and had a blood test done. Luckily we met a doctor who recognised the symptoms and diagnosed her straight away,” Susan said.
Belle was sent home armed with anti-inflammatories and scheduled for a review in Tallaght in late September. At that stage, they had no notification of an appointment at Our Lady’s Hospital for Sick Children in Crumlin, the sole specialised provider of paediatric rheumatology services. Belle’s symptoms worsened and spread to other joints in her body and by October, she couldn’t cope with the pain. Finally notification of an appointment at Crumlin arrived – for March 2008.
“It was six months away and she was expected to cope on over-the-counter mediation until then. She was almost completely immobile, had lost her appetite, couldn’t go to the loo, her knees were swollen to the size of grapefruit, she was wetting herself; it was devastating to see her walking literally like an old woman, considering the active child she had been.”
Then came the late night crawl across the landing and the cry for her mother’s help.
Susan could take no more. The next morning she drove her daughter to the emergency department in Crumlin.
“I knew when they saw her they wouldn’t send her home. I felt conflicted because I knew we were effectively skipping the queue but I couldn’t live with seeing my daughter’s pain,” Susan said.
After four days of tests, Belle was diagnosed on October 19, 2007, with polyarticular idiopathic juvenile arthritis, a form of arthritis that affected several joints but whose cause was unknown.
In December that year, she had steroid injections which effectively cured her overnight. Her treatment has included the drug Methotrexate, a chemotherapy drug, and weekly physiotherapy which involved driving from her home in Camolin, Co Wexford, to Crumlin. She had to sleep with splints on her legs. Now, aged five, she is in remission. Her mother is “cautiously optimistic” about her future health. She has no such ambivalence when it comes to the need to access treatment early for any child.
“I have no doubt at all that if we’d had to wait until March for Belle to be treated, she would have suffered irreversible joint damage that would have left her crippled for life. She is the poster child for successful treatment, once you are seen and treated on time,” Susan said.
