This story originally appeared in the Winter 2022 edition of the St. Louis Children’s Foundation Magazine. Learn more about how donors make a difference and how you can get involved at any level!
A strong, hockey-loving kid, 9-year-old Tristan surprised his parents one evening when he told them that his left shoulder was hurting. They couldn’t pinpoint a cause and nothing was visibly swollen. After three days, the pain became so unbearable that he had to leave a birthday party early — something Tristan’s mom said triggered her intuition that something was very wrong.
Tristan went to his pediatrician, who thought he had injured a tendon in his shoulder, and was prescribed ice, massage and over-the-counter pain medicine to manage the symptoms. Unfortunately, the pain persisted. After another trip to his pediatrician, he was referred to a pediatric specialist at Washington University Orthopedics office at St. Louis Children’s Specialty Care Center – West County to get an x-ray, which showed nothing out of the ordinary. From there, Tristan was directed to get an MRI, which was also normal. Without a diagnosis at this point, he was told to rest.
No longer allowed to play hockey, or even skate, Tristan was still waking up in constant pain. His mom said it was like clockwork, as soon as the medicine would wear off. While he waited for a second MRI and electromyography test to determine any possible nerve damage, he lost feeling and movement in his arm. The pain was gone, but now they were faced with a bigger issue. Tristan was scared, and so were his parents.
Thankfully the second round of testing finally confirmed the cause — which actually wasn’t an orthopedic-based injury. Instead, Tristan was diagnosed with Parsonage-Turner Syndrome (PTS), a rare neurological disorder that causes rapid onset pain in the shoulder and arm and leads to weakness of the muscles. The issue? The disease is rare and almost unheard of in children. In fact, the prognosis of those with PTS in Tristan’s age group is relatively unknown. But Tristan knew he had to fight to regain the use of his left arm.
Tristan met weekly with Gabby Herrick, PT, DPT at the Young Athlete Center, a therapy and injury prevention clinic for sport-specific rehabilitation. Located at the Children’s Specialty Care Center- West County, the center focuses on high-level, one-on-one care. Gabby used Tristan’s love for hockey to engage him in his physical therapy sessions. She would motivate him and reward him at the end of every session by trying to shoot a hockey puck into the net — his ultimate goal was to return to playing the sport he loved so much.
Tristan’s parents credit Gabby with making that connection with their son, but also credit Tristan with his dedication to making a full recovery by doing home exercises three times each day. “He never complained,” said Tristan’s dad, Ryan. “He was dedicated and wanted to play hockey again. He knew what was going to get him there.”
After months of reteaching his muscles to work again, Tristan now has complete use of his arm — something his parents, doctors and therapist couldn’t guarantee months earlier. After having to sit out the previous season, he cried happy tears when he was told he could participate in tryouts again. While there is a possibility to have the PTS return, Tristan’s care team has created an immediate intervention plan to avoid the extensive damage suffered the first time. His care team is now dedicating time to sharing their experience with pediatric PTS — caused by his body’s reaction to an unknown virus — with the medical community in hopes their knowledge will help another child.
As of now, Tristan is back and better than ever. Awarded a coveted spot on his club hockey team, he is playing hard and bringing his positive attitude to the rink. His parents are on high alert for another bout of pain but are thankful to the team at St. Louis Children’s and Washington University Physicians for helping their son make a full recovery.