Dillon’s leg pain turned out to be complex regional pain syndrome
One year ago, Melanie Wilford's son Dillon began experiencing horrific leg pain. After a year of hospital visits, the 11 year old was finally diagnosed with complex regional pain syndrome – or 'suicide disease'. The condition leaves sufferers in so much agony, they’re at risk of taking their own lives."It’s impossible to describe how I felt as a mother when my son, Dillon, was diagnosed with suicide disease at the age of 10. “What the hell is that?” I thought.
As the words sank in, my mind swam with all sorts of horrific possibilities. I wasn’t sure how or if I could keep him safe and I had never felt so helpless.“What’s the matter?” I asked, as he slung his schoolbag over his shoulder.I didn’t worry too much. I was a busy single mum to Maddie, now 24, Ben, 20, Oliver, 14 and Dillon, now, 11, so I knew that aches and pains usually vanished just as quickly as they came.I dropped the kids off and then got on with my work, training as a nurse.
“Show me where it hurts,” said a doctor. But Dillon couldn’t pinpoint the exact source of the pain. All he felt was the agony. Baffled, the medics sent us home. But Dillon’s pain was unbearable to see. All that week we were up throughout the night and back and forth to the hospital. It was during one of our hospital visits when Dillon pleaded with the doctors to cut his leg off. “I can’t take it any more,” he begged. He also asked me to let him die.My blood ran cold. As a mother, hearing those words is your worst nightmare. I had to watch Dillon suffer, helplessly. I can’t put into words the frustration I felt over that.
He continued, “The pain can be very severe and persistent. It’s impossible to identify the source of the pain, which makes it so difficult to cope with.”As the shock sank in, I began to feel a sense of relief. At last we had a name for his problem. I prayed a diagnosis meant Dillon could be treated and cured, but his doctor insisted there was little he could do. He could offer relief, but not a cure. He had no idea why Dillon had developed CRPS or whether he would get any better – or any worse.
He was prescribed a cocktail of medication and had intense physiotherapy. Yet he still screamed in pain almost constantly. He slept with me each night because the noise woke the other kids. Maddie was a huge help – I don’t know how I would have managed on my own.
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