My Young Child With Chronic Pain (CRPS)
My Most Important Challenge; 2 Kids, 2 Diagnosis’s
My Young Child With Chronic Pain (CRPS) – I am a special education teacher and in one of my classes I read an article entitled, “Welcome to Holland” about the process of a parent accepting good in the unexpected development of having a child born with a disability. I read the article and I thought, “Yes, that makes sense”. As a special education teacher, I could see the wisdom in the words and knew the awesome unique talents that my students demonstrated which had taught me so much over the years. It all sounded good, until my own life fell apart.
Between the months of July and December of 2012, everything about my life changed. My three-year old daughter, Riley, was evaluated for autism and found to have Sensory Processing Disorder, a trip to Holland that I wasn’t expecting to take . . . and that was the easy process for the semester. While we were going through the challenges of having a kiddo who couldn’t handle the world, we had another one whose life was falling completely apart and that trip didn’t have a single destination to get used to, but a flight on a plane with a collection of captains that didn’t know where the heck they were going!
When my son, Patrick, who was 8 at the time, jumped off of two steps in our front yard on July 18, 2012 and sprained his ankle, I wasn’t overly worried. Sprains happen. Accident happens. No big deal . . . except it was a big deal. A GIANT deal. The BIGGEST DEAL in the world!
I had sprains as a kid, LOTS of them actually and I have some issues with my ankles, but I had never thought a sprain could last this long, and why was the pain getting worse!?!?! That’s not what is supposed to happen. I took him back to the doctor at the clinic – no help. I asked to see his regular doctor – more x-rays – no answers. I advocated for an orthopedic doctor – no answers – more x-rays. I insisted on a pediatric orthopedic specialist – an MRI – no answers. The more I insisted and the more his pain increased, the more doctors asked me what he was trying to get out of and the more “Mamma Bear” I became. I found that I couldn’t be a nice mom, respectful of doctors and schedulers. If I didn’t throw a fit, nobody took me seriously.
After the MRI came back “fine” I was so beyond being nice. They again insinuated “everything’s fine, it is in his head” and my response was, “His foot is cold and blue and can’t be touched! That’s not in his head, it’s in his FOOT!” I insisted that if he was “fine” then clearly he needed physical therapy as he hadn’t walked in four months. The doctor reluctantly agreed – after all, by that point I had a reputation as a “Pain in the Booty”. The first physical therapist that saw him did the evaluation and insisted that he walk. He screamed and cried and it was the worst experience of my life, sitting in a room and allowing them to torture my child. At our first official appointment, things were proceeding in the same way. I told the physical therapist that I would have to wait outside, I just couldn’t watch, each and every one of my momma senses was screaming “NO!” After five minutes, this physical therapist, this angel, walked out of the treatment room and sat beside me and said, “This is not what they are saying it is, this is CRPS.”
CRPS. Those four letters, and the dreadful disease they are attached to, were the answer that we needed and never wanted. Complex Regional Pain Syndrome, sometimes known as Reflex Sympathetic Dystrophy (RSD) and originally known as Causalgia during the Civil War, meant that everything in our world had changed without us knowing, and it would never be the same. We were sent to the pain team at the local Children’s Hospital the next week and within three days had a diagnosis, a Triple Phase Bone Scan, and his first Lumbar Nerve Block. Within three weeks he was doing a week of inpatient care in order to regain movement and function with the help of pain medication in the nerve spaces of his leg. Things moved fast because he was in really bad shape when we finally found someone who knew what was going on – his case was considered an emergency in that moment.
These days his case isn’t an emergency, but the impact of this condition have changed everything about my gifted young man. His CRPS is full body and his CRPS pain is constant. We tried traditional medical routes of care and found that the cognitive functioning consequences weren’t worth the slight benefits for him. We have worked hard to change our focus from the fact that we cannot do anything about his pain to helping him achieve his goal of creating connections with other kids with CRPS and making sure that CRPS kids don’t have to be alone with this disease.
My life didn’t settle in Holland. I might be in the Nepal . . . pretty in its own way, but full of challenges, and not someplace I expected to wind up. A place where we have worked hard to learn to live our unexpected life and find ways to make a difference for others. Negotiating the needs of a daughter with SPD, now age 7, and a son with CRPS, EDS, and Colitis, now age 12, can be a challenge, but it is the most important challenge I have faced so far.
Do you have a child with chronic pain?
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My Young Child With Chronic Pain (CRPS)