By Sean O’Malley
When Susan Conway brought her son Alex to CAMH’s emergency department for the first time, she brought a pillow.
“I told them they can call security, but I have a pillow in my car and I’m not leaving until you have a plan in place for my son.”
Like many of the 3,000 other young Canadians who will be taking part in the CAMH TAY Cohort study, Alex came to CAMH in crisis. Formerly a happy and contended child, Alex’s mental health had been deteriorating for the past two years, starting when he was around 17-years-old. Anxiety. Irritability. Social isolation. Declining interest in school. Panic attacks.
“Because it was those teenage years, it didn’t click for me right away because that can be a difficult time in life,” says Susan. “But it didn’t take long to realize that this wasn’t typical teenage angst. None of us knew what was going on but he just didn’t feel right.”
Susan and Alex had come to the right place. The Slaight Centre’s Early Intervention Service is one of the world’s leading clinical care centres for the treatment of first episode psychosis in teens and young adults.
Problem was, Alex did not fit the criteria for enrolment because he did not exhibit any signs or symptoms of psychosis.
“I remember apologizing and saying I’m sorry I’m being so forceful but we can’t tolerate this anymore. He needs help. And one of the clinicians said, ‘You never need to apologize for advocating for your son.’ That was so impactful. It gave me the strength to continue to advocate and know it was the right thing to do.”
At Susan’s insistence, while they did not formally admit Alex into the early intervention program, they did agree to monitor him closely.
“There were no overt signs of psychosis at that time. There was lots of examples, little things that were going on. None of them on their own were big enough for a lot of people to pay attention to. It was a gradual development of more and more things that became alarming to us. I just had this bad feeling in my gut. I felt scared.”
That decision may have saved Alex’s life. Three months later, while still under close observation by CAMH, Alex had his first episode of psychosis, putting his life in imminent danger.
“The need to listen to parents and caregivers is a key part of this study,” says Senior Scientist Kristin Cleverley. “They are the ones who see our patients day in and day out and they can see the nuances and subtle changes in personality and functioning. So engaging them in co-designing this study allows us to use their wisdom and experience of the health care system so we can better understand their experience with the health care system so that future patients can benefit.”
In many ways, Alex’s journey is what the CAMH TAY Cohort study is all about. The hope is that by closely monitoring 3,000 young CAMH patients like Alex over a five-year period of their lives while their young brains are still developing, the research team will be able to essentially develop an atlas of the developing brain that could allow frontline clinicians to determine who may be most at risk for developing psychosis, and come up with interventions that may prevent it before it emerges.
“I think Alex would have been a perfect candidate for this study,” says Susan. “The way CAMH responded to my concerns is exactly what they are doing with this study—responding to the warning systems rather than saying ‘we’ll wait until it happens.’”
If the TAY Cohort study had been underway when Alex first came to CAMH and he agreed to take part, researchers would have spent the next five years mapping out a full picture of Alex, in five categories. It might have looked like this:
Building at atlas of Alex’s brain
- Mental and physical health signs and symptoms. Alex’s surface symptoms would have led to an initial diagnosis of anxiety and depression and treatment would begin immediately. At the same time they would chart any other mental health concerns that may have emerged earlier in his childhood. For example, Alex went through a period in his early teens before his mental health began to deteriorate when he had sleep disturbances, sometimes waking up terrified in the middle of the night and running out of the house in his pajamas, even in frigid weather, to escape an imagined threat. “In retrospect, that was probably the first sign that something was amiss,” says Susan.
- Cognition and education. A gifted student who had always done well in school, Alex’s declining interest in academics and any subsequent drop in his grades would have been another area of concern. CAMH would do tests on Alex’s cognition, memory and functioning and look for changes over the five-year study period. Principal Investigator Dr. Aristotle Voineskos compares it to physical growth charts for young children. Just like deviations from normal growth trajectories would be a concern for a pediatrician, so would changes in cognition, memory and functioning be a concern for clinicians assessing psychosis risk.
- Images and genetics. Neither Susan nor Alex’s father had been diagnosed with a mental illness, but two of Susan’s brothers were. Armed with data from the genetic testing and brain imaging of all 3,000 patients, the team would look for similarities and patterns in Alex’s genetic and biological profiles to best assess what category of risk for psychosis Alex might be in.
- Service use utilization. Because Canada has a single-payer public-funded healthcare system, the history of every patient’s experience with the mental health system before they came to CAMH can be tracked and layered on to Alex’s emerging profile. Like Alex, 75 per cent of young people who develop psychosis have had at least one previous interaction with the system in the previous three years. But also like Alex, only 5 per cent of those young people showed any overt signs of psychosis before it emerged.
- Putting the puzzle pieces together. The final piece is the machine learning, computational power of the Krembil Centre for Neuroinformatics, which will integrate data across all of these domains and platforms to build a comprehensive multi-scale picture of the whole individual, from genes, to brain, to behaviour, to community.
Putting the pieces together
“It is clear to anyone who has lived with or alongside mental illness that we should be considering all of these things together, and it can be mystifying to them why we aren’t already doing that,” says Dr. Daniel Felsky, head of Whole Person Modelling at the Krembil Centre. “Psychiatry is still behind in a lot of ways. Some of the most fundamental pieces of the puzzle—the root causes—are the ones we’re missing right now. Patients and families know that something is wrong, but the existing clinical criteria do not capture it as the data are not there. This is a new and challenging field trying to connect all of these data points and understand how they may inform one another. Until now it has been hard to find the data resources and groups of scientists collaborative enough to collect it all for each patient.”
For Alex and Susan, the two years between their first visit to a local emergency department and the beginning of their relationship with CAMH was a time of immense suffering and fear.
“Those couple of years trying to get help were the most traumatizing for me,” says Susan. I have a recurring nightmare where my child is drowning and I can’t swim and there are lifeguards and people around me and I’m trying to convince them to help. And they’re saying, ‘No don’t worry, that’s how a person learns to swim. He’ll be fine.’ That’s what those early years felt like.”
Trips to the local emergency department only left Alex and his mother more despondent and confused.
“Having been an emergency room nurse myself, kudos to them for trying but they are just not set up to deal with a psychiatric problem.”
In retrospect, Susan believes that another barrier to getting her son the help he needed was his reluctance to reveal to anyone the extent of his despair at that time. He kept his thoughts of suicide to himself and distanced himself from his mother.
“We’ve always been close, but Alex completely cut me off at that time,” says Susan. “I can only imagine why Alex didn’t want to share the worst of it with me. Fear and not wanting to worry me, I think.”
“I think a lot of it for me was just shame and embarrassment around accessing the mental health system,” adds Alex.
A moment of truth
One night it all fell to pieces and he just disappeared from home in the middle of the night.
“When I finally found him at a train station, his words to me were, ‘I’ve been trying to keep myself alive for you for two years. It’s time for you to let me go’.”
She didn’t let go. She held her boy tight and took him to CAMH.
“I think in many ways it’s a miracle he is alive,” says Susan, pausing briefly as the weight of memory overcomes her. “There are probably so many people who die by suicide during that time before their illness is fully obvious to everyone. It speaks to the intense suffering of people with mental illness. I’ve been a nurse my whole life and I’ve seen a lot of human suffering and it’s up there with the very worst of it.”
After his psychosis fully emerged, it would take another three years of trial and error at CAMH with different drugs and treatments before Alex responded successfully to a particular anti-psychotic drug. Now 24, Alex is able to manage his illness, and his functioning has recovered to the point where he now lives on his own and is back in school pursuing a university degree in computer science.
Wondering what might have been can be a painful experience for people with lived experience of psychosis and those who love them. Could the right intervention at the right have time have saved Alex and his mother enormous suffering?
“It would have been great to have had been able to predict, based on the characteristics of my mental illness, that certain drugs may have worked better than others, and I could have just jumped over those first two years,” says Alex.
They also wonder if Alex’s cannabis use at that time may have put him at greater risk. He used it as a form of self-medication to try and ease his troubled mind. As his mind became more troubled, his usage increased.
He had no reason to believe it could put his mental health at serious risk. The science of cannabis and the brain is so new that Canada’s clinical guidelines for lower-risk cannabis use (developed by CAMH) didn’t at the time discourage teens from using cannabis or recommend abstinence for anyone with a family history of psychosis. They do now.
If the TAY Cohort study does find a further association that cannabis use in the 3,000 at-risk youth is associated with an increased risk for psychosis, it could lead to further changes in clinical guidelines and public policy regarding cannabis use and the developing brain.
In the meantime, now that there is a confirmed history of psychosis in Alex’s family, he is educating his young cousins about cannabis use. And as hard as it has been for Alex and Susan to reflect on some of their darkest days, they wanted to share their story in support of the TAY Cohort study because they truly believe it will save lives.
“The real reason patients and families get involved in research like this more often than not is altruism,” says Dr. Lena Quilty, co-lead of the memory and education part of the study. “It is amazing of them to share so much of themselves with us. I certainly hope they feel that reward and sense of meaning from giving back and contributing to something this big and important that will benefit all future patients in Canada and beyond.”