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'The hardest part was not knowing': Rothesay mom shares son's journey to ADHD diagnosis

When Kate Wallace's son Gus started walking before he was nine months old, she knew something was different.

"I could never take my eyes off him," said the Rothesay mom, who described Gus as a stubborn baby who stood out for his energy level. "He just wanted to move and go."

The trend continued when Gus was a toddler. He would have tantrums and was rough with other children. He was oblivious to his surroundings while he played.

"People would say, 'Oh, he's just a boy, all kids have tantrums,'" Wallace said. "It felt like we were struggling more than the average person.

Doubted themselves

"My husband and I would look at each other and be like, 'What is wrong with us? Why can't we handle this one kid?'"

Last May, Gus, who is now six and in kindergarten, was diagnosed with attention-deficit/hyperactivity disorder, or ADHD, a behavioural condition that may consist of a variety of problems, including poor concentration, impulsive behaviour and hyperactivity.

The couple had spent eight months fighting for a proper diagnosis for Gus.

"The hardest part was not knowing … we were completely devastated by this," Wallace said. "We felt like we were out in the wilderness."

She said the first sign of a system failure was in September 2015. The couple enrolled Gus in a private school that included a junior kindergarten program and hired a private educational assistant for their son.

Within a month, he was kicked out because he was seen as a danger to other students. Wallace described it as a shock.

"We were thrown into chaos," she said.

Gus was referred by his family doctor to a pediatrician. From there, Wallace requested to see a developmental pediatrician, who would focus on children with developmental disorders.

A full-time pursuit

While they waited, the couple deployed other resources as well, including a psychologist and an occupational therapist to determine what was wrong.

Eventually, Wallace quit her job to be with her son full time, while the couple spent thousands of dollars trying to pinpoint a diagnosis.

Almost a year after his diagnosis, Gus enjoys playing with his Lego and venturing outside, where he enjoys playing with his parents.

Gus is on and off medication, while his parents decide what's best for him. But it was a long road to that point, with several disappointments along the way. And Wallace still worries about the future.

"As a parent of a kid with ADHD, I don't feel there is a system, I feel like it's this vast landscape of unconnected silos," she said. "You feel like you're all alone in this."

Help for other parents

Sarah Gander, a general pediatrician in Saint John, is looking at ways to improve the lives of children who could be living with a behavioural disorder such as ADHD. In her research, she's also hoping to decrease hospital wait times for families within the health-care system.

Wallace is hoping Gander's research will help other parents embarking on a similar journey, making the system more efficient for parents.

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Gander says some children can wait three months to a year to see a doctor about a diagnosis at the request of a parent, school, family doctor and sometimes even within the local emergency room.

Gander said children who go undiagnosed are often struggling in school and need help from a guidance counsellor, resource teacher or tutor.

"Finally people throw their hands up and say, 'This isn't working, we need to go see a doctor,'" she said. "And then lo and behold, I'm supposed to figure them out in an hour consultation when they're obviously a very complex person."

She said on many different occasions, all a child needs is a learning assessment or to have an analysis of their mental health.

"How many of these patients come to my office and I'm not the one they needed to see?" she said. "That is frustrating for the family and costly for the system and creates a waiting list, so I don't end up seeing the patients as quickly as I need to see them."

Inside her Saint John office, pediatricians see about 150 referrals a year, and Gander said there are more across the province.

Patients looking to receive a diagnosis can be as young as three and as old as 17 and about to head off to university.

"[We're] trying to understand the path that people have to go through, either to get to us as pediatricians or afterwards, when they come to find out that they need to see another community organization or agency," she said.

The Goal

About three years ago, Gander started collecting data that she hopes will improve the system.

Once she's finished collecting, she plans to distribute her findings across the province to help in fields such as medicine and education. She's also hoping the data will be used at conferences.

"I decided this was madness and we need to better understand how to direct people because the problem is common," she said.

She said the data consists of a variety of cases, referrals of behavioural problems, as well as the services patients had to access before and after a referral.

She said this will help family physicians, nurse practitioners to become better equipped on where to send patients who might have ADHD or other behavioural issues.

"It's a really nice interprofessional topic," she said. "It's our job to try to make [the system] better."

She's also hoping her findings will help parents like Wallace.

"Parents tend to be at the mercy of the system, particularly the health-care system," she said. "I think it's time to really bring in the families as part of a care model."