Taylor Taylor’s Managing Chronic Pain Journey

"The entire staff was amazing, from nurses to the psychologists. It's an amazing program. The staff goes above and beyond for everyone."

Taylor was a young girl who loved nothing more than being active in activities like soccer, softball, and gymnastics, and excelling at school. It wasn’t until one day in the 3rd grade that she experienced a neck injury from a trampoline accident, leaving her with debilitating pain.

By high school, Taylor was diagnosed with scoliosis, a curvature of the spine, and her double curvature led to her needing corrective surgery. They knew this surgery could either help or worsen her neck pain – it was a gamble that was medically necessary. And just a year after the surgery, her neck pain was so severe that she could not even sit up and had to rely on pain medication to cope. She even had to take a break from school. There was no reasonable explanation from medical professionals for the root cause of her pain, so they suggested different therapies.

The pain radiated down her face, neck, and entire body. By her senior year of high school, panic attacks consumed her, as she was unable to cope with the difficulties of managing her unanswered pain.

TaylorTaylor received a diagnosis of chronic pain and fibromyalgia and began a treatment plan including physical therapy, acupuncture, aquatic therapy, and others, but her suffering persisted. Her mother, Linda, started searching for a comprehensive program that interconnected a multidisciplinary approach to healing using modalities like physical and occupational therapy, yoga, mental health services, and more. Through her research, Linda discovered Children’s Specialized Hospital’s (CSH) Chronic Pain Management Program (CPMP). She knew it was just what Taylor needed to finally manage her agonizing pain.

Upon entering the program, Taylor was laser-focused on preparing for college. With a full scholarship ahead of her, she was driven to take control of her chronic pain and make the most out of the next chapter of her life. She was also battling depression due to social relationships and the burden of dealing with the constant discomfort and pain.

A Chance to Manage Pain Once and For All

In February of 2020, at seventeen years old, Taylor was admitted into Children’s Specialized Hospital’s Chronic Pain Management Program. Through an intensive two-and-a-half-week program, she was immersed in a thorough customized therapy program, where she participated in physical, occupational, and aquatic therapy, among other recreational activities in both individual and group settings. Her multidisciplinary team also included a psychologist and nutritionist.

Taylor worked through the challenges giving it her all, and Recreational Therapist Caitlyn Poss acknowledged her dedication to the program, "Taylor showed a lot of interest in meditation, yoga, and art as modalities during therapy to work on her goals. She was open to exploring a variety of different mindfulness activities, breathing techniques, and yoga practices as a way to strengthen her mind-body connection. She engaged in different art projects throughout her stay, which served as a great distraction to help her tolerate and maintain being in uncomfortable positions for extended periods. She stayed motivated throughout her admission and was always open to trying new things."

Linda acknowledged the outstanding staff, "The entire staff was amazing, from nurses to the psychologists. It's an amazing program. The staff goes above and beyond for everyone."

Taylor left the program feeling better than ever and was ready to start the school year off strong.

Learning to Manage the Pain

That spring, Taylor was diagnosed with a herniated disc and a pinched nerve in her lower back. Medical professionals suggested she get epidural injections to help ease her pain. At first, she was hesitant, but she decided to get the injections, and it helped her immensely. That winter, Taylor got into a car accident, which sparked a fibromyalgia flare-up. Again, her severe neck and lower back pain resurfaced. Despite the outpatient physical therapy she was receiving, she was feeling no relief, leading Taylor to fall into a depressive state, withdrawing from school, and losing her scholarship. She decided returning to the CSH Chronic Pain Management Program would be best. Before returning for inpatient treatment, Section Chief of Pediatric Physiatry, Dr. Kate Bentley, requested Taylor attend an intensive outpatient psychiatry program for mental health due to her severe depression. Linda was grateful for Dr. Bentley's recommendation, as the program put Taylor in a better state of mind.

As part of her CPMP re-entry plan, Taylor was required to participate in a hybrid marine science course through her school, which included multiple field trips. Some trips were three hours long and included walking on the beach. These trips were challenging for her, given her pain levels, so she switched to online schooling. Once Taylor completed the course, she was readmitted to the program in March of 2023, where she stayed for two weeks. Occupational Therapist Jennifer Merrick said, "Taylor was so wonderful to work with. Taylor was very motivated by the education aspect of the program. She was really able to make that mind-body connection so quickly. Initially, she had a hard time with sustained sitting or attention, which impacted her ability to attend school. Still, by discharge, she could sit and complete schoolwork for an entire class length. It was so great to see her progress."

Linda was so grateful that Taylor could return to CSH and receive the same level of care she received the first time. She shared, "we feel blessed that Taylor could get into the program twice. Even the administrator, Laura, is wonderful. She did everything to help and guide us to get back in, and Dr. Bentley did as well. Dr. Bentley really cares, and you can tell! She's really nice, but she'll tell you how it is; if they hadn't sent her to the intensive outpatient program, I'm not sure where she'd be right now; I'm not sure she would be this far along."

Making Progress Through Physical Therapy

TaylorTaylor found the program rewarding because it pushed her mentally and physically to her limits, and provided a unique physical therapy experience that was novel to her. Linda shared, "they have you using your muscles while using your mind. They will have you coloring on the floor while hanging from a swing and using your muscles. You're not just working out but also engaging your mind."

Physical Therapist Katharine Fowler said, "Taylor was a rock star during her time here at CSH. When she was initially admitted, she couldn’t walk longer than 15 minutes due to her pain and mobility limitations. By the time she left, she was walking on the treadmill for at least 30 minutes! She always made me listen to Taylor Swift, which was a sour spot in our therapist-patient relationship (kidding, kidding!), but she worked so hard every single day to make each day better than the last. I was so proud of all the progress she made while she was here and look forward to seeing what she continues to do in the future!"

One of Taylor's therapy goals was to blow-dry her hair independently. She previously could not hold her arm up long enough to blow dry her hair, but she achieved her goal by the time she was released from the program. Another goal Taylor strived for was to sit upright in a chair for twelve hours without lying down. This was difficult for her because she would get exhausted quickly, but by the time she left the program the second time, she was able to do so. Taylor had reached all of the markers she had set for herself.

Linda's greatest hope for Taylor is eventually finishing school, securing a job, and supporting herself. Taylor is headed towards achieving those goals by attending classes and studying psychology. As one of her mental health treatments, Taylor received art therapy; she loved it so much that she now aspires to be an art therapist. Taylor was impressed with the assignments and how they could help you realize what you were feeling internally.

Linda advises families going through a similar situation to "actually do the program because even if you get the smallest bit of something out of it, it's still something. You just don't know until you do it." She also shared, "I don't know where she would be without the program. The first time she went in, if the program didn't help her, I don't think she could have gone to college. The second time she went in, literally, all the steps helped her get back to actual life."

Learn more about our Chronic Pain & FND Center of Excellence at Children's Specialized Hospital.