“The program exceeded my expectations. Everyone who worked with Connor was so welcoming and helpful. They told us exactly what to do and what his schedule would be. I felt so comfortable leaving him alone,” noted Serena. “Since we don’t live close, I couldn’t see him every day, so I was happy I never had to worry.”
At the beginning of 2024, eleven-year-old Connor had a sinus infection that required antibiotics. After the round of medication, Connor developed a rash and started to complain of body pain. The doctors believed Connor had serum sickness syndrome, which is an allergic reaction to specific proteins in medicines and typically resolves on its own within 1-2 weeks. “We waited two weeks, and while the rash disappeared, his pain never did. It actually got worse and worse with time, and I knew this was not serum sickness,” noted Connor’s mom, Serena.
Connor was experiencing intense pain whenever he put weight on any part of his body, especially his feet. His entire body was in pain to the point where he was not able to walk. “He was crawling around the house and using a scooter to get around outside. We were so close to buying him a wheelchair because getting around was so difficult for him,” added Serena. “This was the turning point when we realized something was seriously wrong.”
After consulting numerous outpatient physicians and receiving no answers, Connor’s family brought him to a local children’s hospital in New York, where he was finally diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS). AMPS is a painful medical condition that can cause pain anywhere in the body. “Connor immediately started occupational and physical therapy in the hospital, but it was limited and for a short period. The hospital highly recommended inpatient rehabilitation at Children’s Specialized Hospital in New Brunswick, New Jersey for a more intensive rehabilitation,” added Serena.
Chronic Pain Management at Children’s Specialized Hospital
Connor started Children’s Specialized Hospital’s Chronic Pain Management Program in May 2024. The program promotes the wellness of adolescents and young adults with chronic pain by teaching strategies to manage pain and encourage functional activity. The team worked with Connor to focus on regaining function and using his body in a normal way through intense physical and occupational therapy. He also worked closely with a recreational therapist, psychologist, nutritionist, social worker, certified teachers, nurses, and physicians.
“He had a full schedule of rehabilitation each day. It was a vigorous program, but it was exactly what he needed to manage the pain. Connor’s treatment plan included waking up at 7:00 am, going to the pool for aquatics for an hour, exercising for an hour, and essentially nonstop rehabilitation until 4:00 in the afternoon,” stated Serena.
During occupational therapy, Connor worked with occupational therapist Alexis Levine on endurance, coordination, problem-solving, attention, and overall tolerance for completing his daily routines and activities.
“At the start of Connor’s inpatient stay, he was unable to participate in activities for prolonged periods, often lost his balance, became frustrated, and required support to organize his thoughts,” noted Alexis. “By the end of his stay, he could participate in 60+ minutes of activity, attend to tasks with less distraction, and complete all his daily routines without added support. He had improved his frustration tolerance overall and was more willing to try new things.”
In physical therapy, Connor worked with physical therapist Colleen Dow on balance, strength, and endurance, as well as, his confidence with all his functional mobility skills.
“Connor came to CSH only being able to walk short distances with a walker and he was unable to negotiate stairs making it difficult to access his home and school environments. He was able to progress to walking without a walker and doing stairs pretty quickly,” highlighted Colleen.
Serena added, “Within a few days at CSH, he was already walking with minimal help from a walker. I couldn’t believe it when I saw him walking by himself. He was still a little wobbly but was walking completely independently. We were both so happy.”
“The program exceeded my expectations. Everyone who worked with Connor was so welcoming and helpful. They told us exactly what to do and what his schedule would be. I felt so comfortable leaving him alone,” noted Serena. “Since we don’t live close, I couldn’t see him every day, so I was happy I never had to worry.”
Life After the Program
After two weeks in Children’s Specialized Hospital’s Chronic Pain Management Program, Connor was able to head home pain-free and walk without assistance. Connor was back to doing everything independently and able to play sports and other activities that he enjoyed again.
After his inpatient stay, Connor zip-lined, hiked, and explored Costa Rica with his grandmother. “He was able to enjoy his summer! He went from being an active boy to not walking to now back to living his normal life,” exclaimed Serena.
For other families going through similar challenges, Serena recommends seeking specialized help. “Trust your instinct. If you know something isn’t right, seek further help until you find answers.”