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Making a Trip to Universal with a Tween and Teen Magical

Our Family's Journey Through CRPS

An edited version of this essay was published by You&Me magazine.

“Do you remember where we were this time last year?” I ask my son as he sits on the brown leather couch in our living room, snuggling with Allie, our little Yorkie Schnauzer.

“No,” he responds, burying his nose deeper into Allie’s short summer coat.

“Wisconsin,” I tell him.

Cole holding Allie

Cole raises his head. His eyes grow wide as the meaning of what I’ve conveyed with one simple word, one place, is acknowledged.

“Don’t remind me of that!” he practically shouts, directly followed by his returning his attention to Allie and yelling, “Squirrel!” which never fails to cause the dog raise her head and ears to full attention and start searching for something to chase. Cole finds this hilarious. He is an eleven-year-old boy after all.

Cole does not want to remember or discuss the trauma he, and subsequently our entire family, went through for an entire year. The climax of that year was a surgery that took place halfway across the country in Wisconsin. Since his surgery, his recovery has been nothing short of astounding. No one looking at him on the baseball field today would know that most of last year he couldn’t walk and was in so much pain he missed most of fourth grade.

Cole would like to forget this ever happened, but I don’t want to forget. I had no idea that a perfectly healthy, athletic child could become disabled from what seemed like a very minor injury. I had never heard of Ehlers-Danlos Syndrome (EDS) or Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD) before he got hurt. Suddenly, I was forced to watch my child sink deeper into pain every day, unable to feel or move his foot, while I felt completely helpless. As a mother, and simply as a human being, I have never been so scared, so lost, or so horrified by how hard it can be to find help.

Cole is his football uniform

On October 22, 2013, Cole was at football practice and during a tackle was hit in the ankle by another child’s helmet. He sat out for a little while but then rejoined practice. His ankle was bruised and we iced it and gave him ibuprofen. We really didn’t think much of it at the time. Over the course of the week, Cole continued to complain about his ankle. We kept him out of football and told him to rest his ankle as much as possible. When it still wasn’t feeling better come Monday, my husband took him to a walk-in clinic to have an x-ray. We feared he might have a hairline fracture or sprain. If it had only been that simple. Cole was misdiagnosed with compartment syndrome and referred to an orthopedist. 

What followed was a month of doctors appointments, tests, repeated trips from our home in Rhode Island to Boston while we desperately tried to figure out what was happening to our son. Within weeks, Cole lost all feeling in his left foot and developed extreme pain from his ankle to his hip. He was evaluated by our pediatrician, an orthopedist, and two neurologists. He had blood work done and it came back normal. But the slightest touch to his leg caused him to writhe and scream in agony. The commutes back and forth to Boston were excruciating for him. Even with his leg propped on a pillow and blankets for cushioning, he not only felt every pot hole, but every seam in the road. So when doctors attempted an MRI, which required placing plastic cameras on his leg, there was no way he could stay still for it.

Several of the doctors that examined our son told us the pain was all in his head or that he was exaggerating it. I found out later, upon joining an online support group for parents of children with RSD, that this is a common response from doctors. I never doubted Cole’s pain. I have a vivid memory of Cole at about six-months-old, lying on his stomach in a few inches of water in the bathtub. He would put his face in the water, then raise his head, shake it back and forth and let out a roar. He repeated this a number of times before dropping his head too quickly, banging it on the bottom of the tub. He lifted his head and his lip was split and bleeding. He paused for only a moment, then smiled, shook his head and roared and kept going. This is Cole’s personality in a nutshell. If he says his pain on a scale of 1 to 10 is a 15, then it is a 15.

Eventually, Cole was diagnosed with CRPS and put on Gabapentin. Gabapentin is used primarily to treat seizures and neuropathic pain. I was surprised to learn that narcotics are completely ineffective in treating nerve pain. He was referred for physical therapy.

Cole’s physical therapy was absolute torture for him and everyone involved. My husband took Cole to most of these appointments, partly because being self employed his work schedule was more flexible than mine, but also because he had to physically restrain Cole while our physical therapist worked on Cole’s leg. I wasn’t strong enough to do this effectively, though there were times when my best had to suffice. Cole would hit, kick, and even bite during these appointments. In the beginning, part of Cole’s treatment involved running a thread up and down his leg to desensitize it. Cole described this as feeling like a chainsaw sawing his leg off.

The leg with tape has CRPS

For someone not familiar with CRPS, the concept of how much pain it causes is hard to wrap your brain around. The pain associated with CRPS is ranked higher than childbirth and amputation, and it can come without too many other medical factors presenting. To look at Cole’s leg, it was hard to see there was anything wrong. It was slightly off color and mottled but only if you were really looking for it. This makes it easy for people, even those in the medical profession, to brush aside how serious the condition is. Not only is there very little to see with the naked eye, there’s often nothing to see in blood work, x-ray, MRI or any other test performed, which leads to something else that’s difficult for an outsider to understand. Family and friends breathed a sigh of relief every time one of Cole’s tests came back negative. But the more and more tests showed nothing, the more and more panicked my husband and I became. Something was very terribly wrong and every time a doctor showed us Cole’s normal test results and said he was fine, we wanted to scream.

CRPS is a known medical condition, but finding treatment is all too difficult and confusing. What works for one patient often does not for another. Much remains unknown about this condition and how to treat it.  Unfortunately, parents need to be wary of the very people and places they rely on for medical treatment when it comes to CRPS and their kids. Emergency room doctors will attempt to physically examine your child, even though you explain it causes extreme pain for them to be touched. They just aren’t trained to deal with it. Cole would struggle to crawl under the gurney to hide from the doctors and nurses. This behavior persisted with every doctor he visited for months, adding evidence for some that what was wrong was a mental issue. Even more disturbing are recent stories  of children with poorly understood medical conditions being taken away from their families. Parents who refuse to accept a mental diagnosis for what they know to be a physical illness risk having their child placed in state care due to suspicion of medical child abuse.

How could these experts send us home with a child who was “fine” when he couldn’t go to school, woke up crying every day, had trouble sleeping at night despite the Melatonin or Ibuprofen PM? Every day he was regressing and withdrawing further under the strain of the relentless pain. He became less verbal, started refusing to work with his tutor and didn’t want his friends to visit. Alternately, he became more angry and violent. He would kick and punch us when we tried to change his clothes, give him medication or bring him to the doctor or physical therapist. He screamed and swore. He threw things and slammed doors, sometimes in the middle of the night, just to wake everyone up. He drew pictures of being blown up with his leg ripped off. He destroyed photos of himself and started lighting things on fire. Of course we tried counseling--two different counselors, neither of which helped. Unless we count the improvement in Cole’s behavior when we promised him that he would no longer have to attend if he stopped behaving so dangerously and abusively.

We are a family of four, two working parents and two boys, at the time this started, ages 9 and 12. Cole had to be removed from school at the start of November 2013 and did not return until after February vacation in 2014. We had to reach out to family and our former nanny to have someone home with Cole during the day. We left Cole in the same clothes for days at a time because changing them was a long and painful process. Our older son, Connor, never understood or was sympathetic to his brother’s plight. This added even more strain to our already very tense family dynamic. I tried repeatedly to explain to Connor that what his brother was dealing with was beyond any injury he had ever experienced but he never got it. They had always been two rowdy, active brothers and Connor could not accept the fact that his brother couldn’t even be touched or jostled in any way now. In Connor’s mind, we were overreacting and cared about Cole more than we cared about him. Cole didn’t have to go to school, could stay home and play video games and Connor got screamed at every time he touched him. We put Connor in counseling during this time as well. It did not help at all.

As the saying goes, “when it rains it pours”,  and it turns out Connor did have a point that he wasn’t getting enough of our time and attention while we were focused on dealing with Cole’s CRPS. In October of 2014, Connor was diagnosed with Osgood Schlatter’s Disease . Over the course of the past year he had been complaining of pain in his left knee as well and was forced to stop running track and swimming. He was seen by our pediatrician, an ER, a walk-in-clinic and twice by a pediatric orthopedist, and had two sets of x-rays. Everyone told us that Connor was fine, and since he was if he wasn’t involved in a sport, and because we were highly distracted, we shrugged it off as normal growing pains. It is also very hard as a parent to accept that your older child has developed pain in his left knee while your younger son is battling CRPS stemming from an injury in his left knee. While I was not inclined to believe the pain was in Cole’s head, I did wonder if the pain Connor was experiencing was psychosomatic or at least being exaggerated. Connor felt quite vindicated when he was eventually diagnosed at a local walk-in clinic. He was also referred to physical therapy to ease the strain on his knee by increasing his flexibility and strengthening his hips. For several months we had two children in physical therapy for a total of five appointments a week.

Cole wearing his leg brace

Between October 2013 and December 2014, my husband and I lived in crisis mode every day. There were some days, weeks, even a couple of months, where we were almost lulled into a sense of normalcy. Cole did manage to attend school between the end of February until the end of April. He had a brace that strapped around his calf with a base that slipped under the lining of his shoe. It held his foot in position so he could walk even though he still couldn’t feel or move his foot. His pain never went below a 6 and he was still in physical therapy three times a week. He experienced a major setback the first weekend of May after playing catch in the yard and throwing a tennis ball against the garage. CRPS might not appear completely debilitating when you see a child play outside like this. Cole looked like a normal kid playing outside that day, except for the brace on his leg. However, by that night he was in absolute agony again. He never made it back to school that year.

Cole’s physical therapist, pain doctor and pediatrician were key in treating Cole’s condition. Even when other specialists told us the pain was all in Cole’s head, our pediatrician was a voice of reason. “Cole does not respond to having a needle poked in his foot,” he told us, “You can’t fake numbness.” The pain doctor increased the Gabapentin the neurologist had prescribed. He put him on Ketamine for his pain flares and also Valium to counteract the irritability and violent behavior the Ketamine exacerbated. He took the temperature of both of Cole’s legs. The left was 18 degrees colder than his right, another sign that something was physically wrong. He added Low Dose Naltrexone to help with his circulation as well as the pain.

With the medications helping to lower Cole’s pain, the physical therapist was finally able to gain more hands-on contact with Cole’s leg--not that Cole cooperated, my husband was still physically restraining him, but he was less violent during the sessions--and tell us what the x-rays and failed MRI could not. His fibula was subluxing, actually dislocating,  80-100% out of joint. The hit to his ankle had popped his fibula in at the ankle and out at the knee. Not only was this painful on its own but it was also putting pressure on his peroneal nerve. The orthopedist had already told us that his peroneal nerve was somehow compromised--causing his numbness, foot drop, and consequently the CRPS--but now we knew what was damaging the nerve. It was also the pain specialist and physical therapist that told us they suspected Cole had EDS. A genetic test would later indicate he does not, but these tests are not definitive, so it’s hard to be sure.

After wearing a leg brace to enable him to walk, months of physical therapy, and attempting electronic stimulation, Cole was eventually referred to an orthopedic surgeon in Wisconsin who specializes in patients with EDS and CRPS and has experience operating on children. Cole had an allograft  to stabilize his fibula on June 10, 2014. He came out of surgery in a full leg cast and immediately wiggled his toes for the first time in eight months. My eyes sting with tears just remembering it. While Cole did have some pain after the surgery, I am sure now that it was simply post surgical pain and the swelling of his leg in the cast. His CRPS went away as soon as his fibula was stabilized and his peroneal nerve entrapment released.

During Cole’s surgery I took several weeks of family leave to travel out of state and then care for him our first week back home, but otherwise we were both juggling full time jobs and Cole’s medical needs as well as Connor’s. It took everything my husband and I had to go to work and care for our boys. We both had moments when we completely fell apart. One night I came home, exhausted from the previous night spent in the ER after long days at the office. My husband was leaving for work, Cole was in full on tantrum mode. I collapsed on the floor and started sobbing. Sometimes these breakdowns can be beneficial. I’ve never been one to cry and the sight evoked the first signs of compassion we’d seen from Cole in months. Another day my husband called me at work beside himself after a trip to the physical therapist. He told me he couldn’t keep going through this with Cole every day. He had scheduled an appointment for Cole to be seen by a surgeon in Wisconsin in three weeks. In the moment I was shocked, but we had definitely exhausted our options.

A number of my friends joked with me, that I must really need a drink at the end of the day. I rarely had the luxury. As any parent knows, you’re never really off duty. If your child is up sick in the middle of the night, that means you or your spouse is up in the middle of the night. Cole was in extreme pain all the time with the CRPS. If his pain flared, we had to be prepared to jump in the car and drive to the hospital. Even when we learned that the emergency room wasn’t able to offer us any help, we had to be prepared to deal with his incessant pain our own. The whirlpool seemed to help, so sometimes in the middle of the night we’d find ourselves drawing him a bath and helping him into the tub. We’d also keep doling out medication, Ketamine and Ibuprofen PM, in the incremental ways we’d been instructed by our pain doctor until we could finally get him to pass out. Blessedly, once he fell asleep, the part of his nervous system sending the pain messages would shut off, and he could stay asleep. But it would all start over full force the minute he woke up the next morning.

Cole after getting his full leg cast removed

Cole’s CRPS subsided immediately following his surgery, but the remnants of it stays with us. Once someone has experienced CRPS, that person has a predisposition to get it again following an injury. For this reason, Cole is prohibited from any contact or high impact sports, so football, soccer, basketball, hockey, as well as a number of others, are prohibited. He also can’t participate in any activity that can cause great strain or twisting of his knee, so no trampolines, skiing, snowboarding, skateboarding . . .  you get the idea. Unfortunately, Cole is now an eleven-year-old boy and the more he feels like his old self, the more he wants to participate in his old activities. I worry that one of these days, when I’m not looking, he’s going to jump on a friend’s skateboard and this could start all over again. I hold my breath every time he slides into base during a baseball game. It’s not a high impact sport, but that doesn’t mean he can’t get hurt. I’ve had people suggest that I pull him out of sports altogether and have him take piano lessons instead. Let me tell you, there’s a part of me that would love to put both boys in bubble wrap, but I can’t do that. Cole lives to run around and play sports. His first word was ball. Trying to take all sports away from him would make him miserable, and it would only make him more likely to take part in them when my back is turned.  

I was not at all prepared for the nightmare of CRPS, but my son did survive, our whole family survived it. I continue to read posts in the support group of all the children still suffering in pain and I can’t help that feel that part of Cole’s recovery was just blind luck. These parents are seeing the same doctors, trying the same drugs, treatments, and surgeries, but many have not been as fortunate. There were no clear cut answers or treatments for us to follow.  My husband and I found ourselves making medical decisions we always expected a medical professional would make for us. We had to keep researching, talking to other families dealing with CRPS, meeting with various doctors and experts until we finally found the answer for our son. We flailed the same way these other parents are still flailing and we got lucky. We dodged a bullet and we still aren’t sure what we did differently from a number of other families.

As I watch Cole snuggle on the couch with his dog, I still see the shadow of the pain that plagued him for eight solid months without mercy. I feel the temptation to force it from my mind, like I know he does, and pretend it never happened. I want to focus on all of the fun and joy that has returned to our lives; watching him play baseball, a summer just beginning and full of the promise of beach days and a family vacation. And I will. I will embrace the joy and the fun. I will also remember and tell the story of his pain. So when it happens again, to my son, or to someone else’s son or daughter, hopefully more people will know what CRPS is, and curing that pain will not be a long, tortuous process that takes months or years.


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