From pain to pursuing her passion: Lily’s story

Lily, a patient of the Paediatric Chronic Pain Program at Children’s Hospital

June 16, 2023

The day Heather Talbot’s daughter Lily came home and told her, in tears, that she made the volleyball team but was in so much pain after try outs, she decided not to join, was the day Heather said “enough”.

This wasn’t the first time that Heather had seen Lily feel that she had to miss out on experiences due to her pain. In fact, just that summer they had to leave a trip to Canada’s Wonderland early because Lily couldn’t keep walking as her pain was so severe.

Lily suffered from joint pain from her back, hips, knees ankles, and feet. Her family physician originally thought it might be growing pains, but the pain persisted and was becoming less and less manageable. In Fall 2021 when Lily declined to join the volleyball team it had been almost 3 years of trying to find the source with no resolution.
 
In a lucky twist, Heather found out about the Paediatric Chronic Pain Program at Children’s Hospital at LHSC through her role as an Indigenous Transition Facilitator with LHSC. Heather approached their family doctor about a referral for Lily, and they were able to get it.

Soon, Lily and her mom found themselves in a room with an interdisciplinary team who were finally able to tell Lily something no one else had: her pain was real, and they were going to help.

“We were blown away right from the start. Never had my daughter felt so validated,” describes Heather.  

Established in 2015, the Paediatric Chronic Pain Program at Children’s Hospital provides assessment, treatment and consultation for children and adolescents who are experiencing chronic pain that is interfering with school, physical activities, family and social functioning. 

Pain is typically considered chronic once an individual has been experiencing it for more than three months. It may be persisting after an injury should have resolved, it may also be present for unknown physical reasons, or it may be associated with an illness that is known to have frequently recurring episodes of pain. 

“One in five youth in Ontario suffer from chronic pain, however there are only four programs like this in the province,” explains pain nurse Susan Carter, Co-Lead of the Paediatric Pain Program

Chronic pain is known to involve many factors that interact, including biological factors, psychological factors and social factors. Consequently, treating chronic pain requires different approaches working together: physical, psychological and pharmacological (medications). “What makes our program different is the inter-disciplinary approach, and the way we focus on care not just for the child, but for their family and environment, like school. It can be challenging for caregivers and community to support a child through something you might not understand. We have group therapy for the patient as well as caregivers, to help children do more of what they love” Susan continues.

Patients working with the program will first meet with a social worker; physiotherapist; child and adolescent psychiatrist; psychologist; anaesthesiologist; pharmacist and nurse: a whole team of people who can change a patient like Lily’s life.  

And change it did! After 8 months of psychotherapy for the child and family, physiotherapy, medication (which she has since been able to go off of) and with the assistance of prescribed home therapies, Lily’s mom describes her daughter as “a whole new kid”.

Now at 13 years old, Lily just finished performing in a musical production of Matilda with London Youth Theater Education, where she spent 2.5 hours on stage. Much of that time she was dancing, performing complicated choreography, and even jumping off blocks. She would have never been able to do all of this without the tools she learned in the Paediatric Chronic Pain Program. 

“This would never have been possible without the help of this incredible team. As a parent, I can’t tell you how emotional it was watching my child be able to shine in the way she was meant to. I can’t thank the whole program enough. You truly changed our lives.”