Calgary teen given tools to control her own disorder

Without warning on a weekend afternoon at home, 14-year-old Leah Zurbrigg began having severe muscle spasms and could not speak clearly or breathe comfortably. “I felt really scared. I knew something was not right, but I couldn’t identify what it was. It was as if I was frozen inside my body,” says the Calgary teen. When the 45-minute episode was over, she told her mother about her experience. After consulting with their family doctor, Zurbrigg was referred to the Alberta Children’s Hospital (ACH) for evaluation.

Now, two years later, Zurbrigg talks openly about her disorder. She was diagnosed with having psychogenic non-epileptic seizures (PNES). Her disorder resembles an epileptic seizure, but without the characteristic electrical discharge pattern found in the brain during EEG analysis.

“This neurological disorder is far more common than we think, and it is quite debilitating for young people. It is often confused with epilepsy, which it is not,” says Tyson Sawchuk, a paediatric clinical psychologist and PhD candidate who treated Zurbrigg at the Children’s Comprehensive Epilepsy Centre (CCEC) within the ACH.

Specialized diagnostics and treatment

The hospital treats about 80 children with PNES every year. The centre’s researchers are developing a standardized protocol for diagnosis of this condition and have developed a step-by-step guide to follow when providing treatment — the first centre in the world to do so.

“Accurate diagnosis is important because we can treat PNES rather effectively and rapidly with cognitive behavioural therapy or CBT. Otherwise these children would be receiving antiepileptic drugs, which would not benefit them at all,” says Sawchuk, a clinician at Alberta Health Services (AHS) and a member of the Alberta Children’s Hospital Research Institute (ACHRI) at the Cumming School of Medicine (CSM).  

“In many communities, neurologists have no resources to turn to once they suspect PNES. Affected kids need specialized diagnostics and treatment,” says Dr. Julia Jacobs-Levan, MD, director of the CCEC and associate professor in the departments of Clinical Neurosciences and Paediatrics at the CSM. “The PNES care pathway helps neurologists to identify the next step in getting patients into the right treatment.”

Sawchuk is collaborating in a five-nation global study to better understand PNES and risk factors. It’s the largest ever done using cross-cultural comparisons among children. “This collaboration represents a major step forward towards recognition and advocacy,” he says. The findings are published in Seizure: European Journal of Epilepsy.

Once placed on the PNES care pathway, patients undergo medical psychology assessment to help establish the level of diagnostic certainty for PNES before they continue to receive care. Patients then undergo autonomic screening in a psychophysiology lab where they learn to self-regulate their breathing and autonomic nervous system responses to help reduce PNES episodes. Patients then go on to receive specialized cognitive behavioural therapy with additional mental health care as needed, depending on their symptom response.

'Empowering' treatment reduces fears

Zurbrigg describes the treatment in the clinic as empowering. “I was shown in the clinic how I could relax through breathing techniques to control my body and stop the escalation to an episode,” she says. She now has an episode only about once every two months. “It’s really changed my outlook on life!”

Sawchuk says PNES is increasingly recognized as posing significant diagnostic and therapeutic challenges to general medical practitioners and clinicians. He is hoping to increase awareness about the disorder, and reduce the fears of young people facing this diagnosis.

“It does appear as a dramatic disorder when an episode occurs, but we want everyone to know that it is manageable. We have information and medical resources available to help.”

Sawchuk serves on the psychosocial comorbidities committee of the American Epilepsy Society focused on developing continuing medical education for doctors and health-care professionals involved in diagnosing PNES.

Julia Jacobs-Levan is an associate professor in the departments of Clinical Neurosciences and Paediatrics at the CSM and a member of the Alberta Children’s Hospital Research Institute and the Hotchkiss Brain Institute.

The Children’s Comprehensive Epilepsy Centre is supported by community donations through the Alberta Children’s Hospital Foundation.

Led by the Hotchkiss Brain Institute, Brain and Mental Health is one of six strategic research themes guiding the university toward its Eyes High goals.