Determination and inspiration help him to heal
Twelve-year-old Aidan Sullivan is an active kid who loves playing sports like hockey, football, surfing and sailing. But a snowboarding accident in February 2014 changed all that. At 10 years old, Aidan’s life as a typical New England kid vanished, and debilitating pain invaded his small body.
Aidan’s orthopedist initially placed him in a soft cast to keep his knee immobilized. Two weeks later, Aidan experienced hypersensitivity to touch and the extremity turned purple and ice-cold. One night soon after, while completing homework, Aidan realized he had lost all feeling in his foot.
Acting fast in the face of decline
A local orthopedist suspected Aidan might have complex regional pain syndrome (CRPS), a chronic neurological syndrome characterized by severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. He sent Aidan to a Boston Hospital.
With CRPS confirmed, Aidan received an in-patient nerve block and began physical therapy to decrease swelling and limit atrophy, and a desensitization protocol to combat the hypersensitivity.
Still, Aidan regressed. He struggled to bear weight, his leg’s temperature remained cold and he had problems feeling and moving his foot. He had a hard time articulating his pain, except to explain that it was the worst pain he had ever felt.
Worrying about him declining further, Aidan’s mom began to wake up each night to massage and desensitize his knee while he slept; he would stir and grimace.
Aidan tried to attend school part-time, but when classmates would accidentally bump him, it caused his pain to soar. He became anxious in crowds and feared school. It wasn’t long before Aidan was unable to attend school at all, and he had difficulty watching friends playing outside, knowing he could not participate.
Aidan turned to online video games like Minecraft and Roblox to staty occupied. He taught himself to program and began developing video games, posting on YouTube to teach other kids to program. This helped stave off isolation.
Although Aidan began PT within weeks of his diagnosis, he didn’t experience pain relief. Instead, he developed high-pain episodes his parents referred to as “pain seizures.” Without warning, Aidan’s eyes would roll back, his body would tremble and he would become non-responsive, with no memory of the episodes later.
After one episode while in the hospital a pain physician told the family his condition was psychosomatic, and instructed them to talk Aidan through the next occurrence.
The following week, during another pain seizure, Aidan’s parents held him and tried to soothe him, but it was clear Aidan needed assistance. Paramedics confirmed that Aidan was, in fact, non-responsive and not able to hear them.
More tests yield more answers
Recurrences led Aidan’s parents to seek more answers (and more compassionate providers). During a sedated electromyography (EMG), Aidan aroused and responded when the physician attempted to move his leg; the doctor and physical therapist performed a test and found that pressing on his fibula gave Aidan some feeling in his foot—he was able to wiggle his big toe!
Encouraged, Aidan’s family headed to Wisconsin to see an orthopedic surgeon who operated on other CRPS and EDS patients. He discovered Aidan’s fibula was subluxing 80% out, damaging his peroneal nerve. Performing an allograft freed the nerve and Aidan was able to feel and move his leg again; his previously hypersensitive leg was able to be casted.
But four weeks later when a local orthopedist removed the cast, Aidan still experienced significant swelling, hypersensitivity and pain. The local orthopedist suggested Aidan’s family see a counselor for psychological support.
Aidan was living in the family’s recliner, lacking even the mobility required to use the bathroom. Although he still played guitar and video games, he felt isolated. His leg atrophied, its bones de-mineralized.
A team that refused to give up
Fortunately, Aidan had a pain specialist, neurologist and pediatrician who refused to give up.
In December 2014, Aidan was admitted to Spaulding Rehab in Boston. At first, he never left his bed or wanted to socialize with other patients… but the supportive staff, with their can-do attitude, inspired Aidan to push on, By the end of his stay, he was starting to act like his old self again. He became the “Mayor of the Floor” (his dad’s nickname) teaching other kids how to play guitar and leading hide-and-seek games.
Despite regaining some muscle bearing weight while on with crutches, Aidan still had swelling, and his pain spiked in certain positions. His parents, therapists and doctors knew something still wasn’t adding up.
Aidan’s mom researched a technique for CRPS patients: nerve decompression for pain relief. Six months later, Aidan underwent a three-hour nerve surgery by a pioneer in the field. While the surgeon’s philosophy contradicts most research on treating patients with CRPS, Aidan underwent a trial nerve block and had such a positive response that he and his parents decided it was worth a try.
When Aidan woke from surgery, he and his parents were astounded to find his pain was reduced and they could touch his leg again—something they hadn’t been able to do in a year. His allodynia was gone; he still had some leg pain, but the intensity and severity of the pain had dropped from a “100” to a “3.”
Today, Aidan works hard to gain strength. His pain now rests around a “4,” and he is able to get around on crutches and relies less on the wheelchair. He’s getting back to the things he loves; he spent his summer swimming, kayaking and visiting friends. He still plays guitar and develops video games.
His goal is to get back to a normal life. Aidan is working hard to walk; he believes he’ll one day play sports again. He finds motivation in the story of New England Patriots star Rob Gronkowski, who returned to football following a knee injury. Aidan went to the same rehabilitation facility as Gronkowski and even used one of the same knee braces—something he describes as “the coolest thing ever.”
A few months ago, Aidan had a once-in-a-lifetime experience: he met his favorite band, All Time Low. Their music, especially the songs “Therapy” and “Something’s Gotta Give,” have helped him cope on dark days. The band signed his wheelchair and lead guitarist Jack Barakat presented him with a guitar pick.
Through his pain journey, Aidan has tried numerous medications, none of which helped much. He credits peripheral nerve surgery and release of his peroneal nerve for his relief, and recognizes the important role physical therapy plays in his healing.
A wish from Aidan
His one wish is that the public—including healthcare providers—learns to listen better. “Many thought they knew what was wrong with me, without even checking,” Aidan explains. “Those who checked before telling me what was wrong were the ones who helped me.” His advice to peers in similar circumstances: “Keep looking for that doctor who will check what is wrong with you, who will listen to you and work to help you.”
Aidan hopes that sharing his journey shows people how hard it is to deal with complex conditions and chronic pain, and the great need to find more cures. While Aidan prefers to cope on his own, his parents have found comfort and information through organizations like The Coalition Against Pediatric Pain (TCAPP) and the RSD/CRPS Facebook Parent Group for support.
Aidan Sullivan may be young but his strength and determination to beat pain is unwavering. Using humor to help him through the bleakest of times, Aidan stays hopeful for the future. He has the love and encouragement of his family. Though lucky to have found some answers and relief, Aidan’s journey with pain is not over. But he is tough… pain will not squash his dreams.
“I have to keep pushing because life is worth fighting for… I remember everything I used to do, and I know I can do it again if I just keep pushing,” says Aidan.
The Coalition Against Pediatric Pain (TCAPP) – www.tcapp.org