A friend recently told me that a parent is only as happy as their least happy child. Imagine when that child is chronically ill. Our son, Matthew, is suffering from CRPS: Complex Regional Pain Syndrome. It is a little known and little understood condition where a nerve (in this case his left foot below the ankle) is constantly sending pain signals to the brain. As a result, Matthew is in constant agony, often unable to refrain from screaming. He is unable to walk or even touch his foot. A mere breeze feels like daggers piercing his skin.
We first became familiar with CRPS a year ago. A soccer field injury at school was misdiagnosed as a broken ankle and Matthew’s foot was set in a cast for six weeks. Only after the cast was removed and he continued to complain about increasing pain, did we discover — after numerous trips to doctors and emergency rooms — that Matthew was suffering from CRPS. His treatment began immediately, including intense physical therapy and various prescription medications. Matthew was cured in less than two months.
It was nothing short of a miracle. We had our son back and he had his childhood back. He was completely symptom-free for an entire year. Then, almost as mysteriously as his condition improved, he suddenly suffered a relapse. This time it was much worse. The skin on his left foot, which had been only slightly discolored before, was now almost purple and flaky and the swelling was severe.
Matthew had just entered middle school and the new friendships he had started to form in the early weeks of his first semester were suddenly interrupted as the absences from school went from days to weeks to months. The staff at the school could not have been more helpful. They emailed his assignments and graciously provided a teacher to help home-school Matthew through the ordeal.
The psychological fallout has been more severe. This young boy just entering adolescence was now gaining weight due to the various medications, threatening an already fragile and changing self-image. Plus, he was now becoming accustomed to his newfound social isolation. At a time when he should be cementing relationships with friends, those bonds were slowly eroding as his contact was limited to occasional after school visits and phone calls.
His mom, my wife of 27 years, is taking this especially hard. It is never easy watching a loved one suffer and when that loved one is your youngest child, it is especially painful. Matthew is being robbed of the everyday experiences that sixth grade offers — that first crush on the girl in science class, palling around with kids on the playground, riding bikes after school – all of it has been placed on indefinite hold.
Family and friends never quite know what to ask. The question, “How is he, today?” lingers in the air, unspoken, but always understood. “Why can’t they make the pain go away?” and “How long will this last?” Those and dozens of other queries go unanswered because there is, simply, no answer. While CRPS is difficult to treat — there is no cure — it is even more challenging when dealing with a child. Treatments which show promise in adults, including nerve blocks, often cause the condition to actually spread when dealing with a young patient’s still developing nervous system. Matthew’s doctors assure us he will get better and so we believe he shall. But in the meanwhile, we wait and hope and pray for that miracle to happen. Again.