Waiting For A Miracle: My Son’s Battle With CRPS

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.

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One response to “Waiting For A Miracle: My Son’s Battle With CRPS

  1. Dawn Sherwood

    Good afternoon… My heart reaches out to you. I could not help but feel a connection when I read your article. My son Chandler is 11. He fractured his heel last September… he was casted 4 or 5 different times each time his pain got increasingly worse. His orthapedic doctor casually mentioned to me that he might have crps but never offered us any idea as to what that was or a treatment plan. As his conditioned worsened, his entire leg from the knee down to his toes turned purple and his pain was almost unbearable for him. I decided to conduct my own research and then called on another doctor who was surprised and how bad Chandlers condition was. He set us into a treatment plan with nerve blocks and pt… he did not want to start him on meds because he is such a small guy. We didn’t see any improvement from january to March of this year so I contacted a childrens mercy hospital in KC and took him there for a week long treatment of epidural infusion and Pt… he did improve but within a month we were spiralling back down. We tried another epidural infusion with no luck, meaning when the epidural was removed the pain returned. We did many nerve blocks and did start on various medications many of which have not been good for him. Finally about three weeks ago we had a pain pump implanted. Amazingly my son told me that “God” spoke to him and said that he was going to be alright this time. The pain has not yet returned. However he has muscle atrophy and 45% bone loss. I have read so many articles etc. My understanding is that this crps is not curable? So is this remission that my son is experiencing… is that what you were told when your sons pain disappeared? Did you ever expect that it would return? I am so fearful and protective I worry about him having another injury and this starting all over however, I would like for him to be able to do things like a normal 11 year old boy again… he was unable to go to school this year from December until just these past few weeks. So believe me I completey understand your pain as a parent. It has been a very long year. My thoughts and prayers go out to you.

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