In many ways Lucy is a typical four-year-old. She enjoys playing with her younger brother Anthony and her older sister Grace. She loves colouring and riding her bike and scooter outside and the Lion King and Disney princess movies are her favourite things to watch.
But Lucy is not typical when it comes to food. Yes, it’s normal for toddlers and school-aged children to be ‘picky eaters’ in their younger years. In Lucy’s case, however, she is well beyond picky eating. She simply won’t eat the vast majority of foods.
When they went looking for answers and care, Lucy’s family faced challenge after challenge. And while the pandemic played a role, some of those challenges existed well before the pandemic.
Lucy and her family are still looking for answers and a path forward.
Lucy was born in August 2017. When she was around 18 months old, her parents, Candace and Shaun, noticed that she was a very picky eater. They didn’t think too much of it at the time, assuming it was normal, but as time went by and she reached the age of two and a half, Lucy had cut out, one by one, all of the foods that she had previously eaten. “She was down to about three or four foods,” says her mom, Candace. Milk from a bottle, peanut butter, and white bread, were the pretty much the only foods Lucy could tolerate. She would sometimes eat small amounts of strawberries, yogurt, or McDonalds French fries.
At a loss, Candace and Shaun consulted with their pediatrician several times. Eventually, Lucy was prescribed supplement drinks and then referred to CHEO’s Comprehensive Occupational Therapy Feeding Program, also known as the Picky Eater Program.
CHEO’s Picky Eater Program provides support to children who are fussy eaters, refuse food constantly, experience physical reactions (such as gagging and vomiting when eating or drinking) and are not growing as expected. It promotes safe, nutritional, and pleasurable mealtimes for children and families.
At the time, Candace was told it would take six to 12 months before they could get Lucy into the program.
Lucy was about to turn four and was still at a stage where the look, smell, and site of any food other than peanut butter and white bread and the other few “safe foods” would make her scream and gag. “We couldn’t eat near her or she might throw up,” says Candace. “We were beside ourselves, wondering what to do.”
The situation was dire, and Candace and Shaun were eager to get Lucy in the picky eater program to get their daughter some help. They had tried everything else. They’d only met with barriers and frustration. CHEO was their last hope.
When they got the call in November 2021, because of the pandemic, most CHEO outpatient programs were only being offered virtually.
“We did the four-week picky eater parent group from November to December 2021, and we didn’t make any progress,” explains Candace of the initial phase.
Things had not improved for Lucy. Candace, a pediatric nurse by training, worried that they had exhausted all the services that might help her daughter.
Desperate, and with the Omicron variant raging, Candace’s pleas for a follow-up appointment made their way to CHEO Occupational Therapist, Lisa Haley, in January 2022. Lisa, at the time, had been redeployed to another in-patient area at CHEO. Still, she took the time to schedule a virtual consultation with the family. “We have worked with Lisa for a couple sessions,” says Candace, “but we are still struggling with the same thing.”
“All this happened during Covid, everything was virtual. No one has actually seen Lucy in person,” says Candace. “Normally she would have been seen in person, at least once or twice. The feeding program would have been in person, there would have been a picnic in person, and the pediatrician would have seen her in person.”
It’s clear at this point that Lucy needs further evaluation. “She is not well and she is not coping well,” says Candace. “There is clearly something going on, but we don’t know what it is. We are not sure if it is autism, possibly OCD, definitely anxiety issues, behavioral issues and sensory issues.”
The family has been referred to CHEO’s Access team to explore next steps and assessments. But, again, the wait times are very long. It could take more than a year.
“We can’t even find someone outside CHEO to see her,” says Candace. The family is willing to pay for a private assessment, and contacted all the providers CHEO suggested, but lists in the community are very long. Out of desperation, they have even considered seeking medical help out of country, but realize the costs and logistics would be both exorbitant and complicated.
Candace and Shaun just want answers for Lucy. Ideally, they could go to one place and get Lucy the help she needs. They are deeply concerned and know that every day matters for their daughter.
“My greatest frustration is with the health-care system in general and COVID has just made it that much harder. You can’t get the services you need unless you wait years, especially when it comes to mental health,” says Candace. “Young kids need these services now. It wasn’t great before and COVID has just made it that much more difficult.”