Trigger warning: this story mentions topics, including eating disorders, that may be sensitive subjects for some readers.
For most of the past year, teenage siblings Audrey-Anne and Olivier Asselin have eaten a steady diet of tofu, pasta and popsicles – but not by choice.
It’s all they can stand – the few foods that they can stomach after contracting COVID-19.
Pretty much everything else smells like trash. Literally.
The pair developed parosmia, a condition that drastically distorts their sense of smell to the point that everyday scents make them sick to their stomachs. Olivier describes food they used to eat regularly as now having a tinny, revolting odour similar to the “bottom of a garbage bin.”
Researchers recognize parosmia as a potential symptom of long COVID, but what makes the Asselins’ cases so curious is that before the pandemic, it was extremely rare for children and teens to lose their sense of smell because of a viral infection. Experts say it’s even more unusual to see this phenomenon in relatives.
“It’s very interesting to see that there’s two family members with the same symptoms, which is not something that is commonly seen,” says Dr. Johannes Frasnelli, an anatomy professor at Université du Québec à Trois-Rivières. “There may be some genetic component to it, which would explain it, but this is complete speculation.”
The teens’ mother, Marie-Eve Naud, is one of the Canadian parents desperate for guidance on how to help their children with the condition. As of right now, there is no cure for parosmia.
Both of Marie-Eve’s children have been haunted by warped odours and flavours since last May – four months after her husband, Sébastien Asselin, and two kids caught COVID-19. Only Olivier and Audrey-Anne, however, developed parosmia.
Seventeen-year-old Olivier remembers his first sign that his senses were changing was while he was eating ramen, which he describes as having a chemical taste.
“It became worse each day,” Olivier says of his condition.
His sister says she discovered something was off when she tasted something metallic in green vegetables, which her parents said tasted good.
Ever since, dinners at their Quebec City home have never been the same. The smell of home-cooked meals that permeates their house – and once brought the family together – has kept them apart. Their mother says for two months, Olivier isolated himself in the basement to avoid the smells. Both children say the scent of cooked meat is a huge trigger, which experts say is common among parosmia patients. Audrey-Anne says meat often smells like mould.
“The meat is the worst,” she says in an interview conducted in French. “It’s overwhelming.”
Marie-Eve says she often makes two different meals – one for her husband, her youngest, 15-year-old Xavier Asselin, and herself, and another for Audrey-Anne and Olivier, hoping they can tolerate the smells. When she cooks onions, which bring on Audrey-Anne’s parosmia, she separates these veggies from the main dish so she can serve the meal to her daughter without them.
The mother, who also spoke to Global News in French, says the hardest thing is watching them suffer.
“I would take their place if I could,” Marie-Eve says tearfully. “I’m trying really hard to make things better for them.”
Last year, the whole family but Olivier went on vacation because all he could bear to eat was cheese and tofu, his mother says, and he had to stay behind. Audrey-Anne avoids going to restaurants, as she says she has no idea which new foods may trigger her parosmia.
But what the 19-year-old misses the most is lunches at school with her friends. She says her stomach turns and she feels nauseated as they eat their homemade food because the scents are so unbearable, so Audrey-Anne feels she has no choice but to leave.
She says she never lost weight because of her parosmia, but Olivier says he did initially before gaining it back.
He says he forgets what some odours smelled like before he developed the condition.
For months, the Asselin children knew so little about what was happening to them. It was only last September that they found out their illness had a name. Audrey-Anne opened up TikTok on her phone and discovered Ashley Zibetti, an American mother and photographer whose video about her own parosmia case has racked up more than four million views.
The caption reads, “Have you heard of this?? #parosmia,” and in the video posted last year, Zibetti explains she uses a nose clip to eat meals to help suppress the terrible smells.
People all over the world have made TikToks using the hashtag #parosmia to document their own experiences. These videos have been watched more than 137 million times.
Frasnelli is a proponent of people raising awareness about this condition, as it’s one of the long-COVID symptoms that have persisted in some patients for months – and even years – after the virus infection.
What we know about post-COVID parosmia – and what we don’t
Going back a couple of years, Frasnelli says any “studies on sense of smell were exotic.” Now, data is coming out so fast that Chrissi Kelly, founder of U.K. charity AbScent, says she has trouble keeping track of it all.
“Parosmia had been considered a black box,” says Kelly, a parosmia patient herself.
But that’s changing quickly as “COVID patients are making a lot of noise about this.”
This helped push researchers across the globe to take more of an interest in this area, says Frasnelli, who recently published his own work on post-COVID-19 parosmia and other olfactory conditions. He tracked the symptoms of a group of health-care workers infected with COVID-19 during the first wave – and experienced olfactory issues – and found 17 per cent of these people had parosmia five months after the infection. This rose to more than 50 per cent at 11 months.
“It becomes more prevalent with time,” says Frasnelli, who’s also a researcher at Sacré-Cœur hospital in Montreal.
“COVID patients are making a lot of noise about this.”
But what’s still a niche – but burgeoning – area of interest is studying olfactory issues in pediatric-age patients.
A January 2021 study out of Spain did not focus on parosmia specifically, but 15 per cent of the 33 children infected with COVID-19 referred to anosmia (loss of sense of smell) and/or dysgeusia (distorted sense of taste) on a questionnaire. All of these children were more than 11 years old.
Audrey-Anne can attest to those findings – she briefly lost her sense of smell and taste before getting them back, then she experienced parosmia months later.
Frasnelli says people can develop the condition because their olfactory sensory neurons are going through faulty regeneration after a COVID-19 infection.
“People do not smell anything and then they start smelling again, but the smells are not quite right yet. So one of the hypotheses that we have is that there is some rewiring happening between the nose and the brain, but the rewiring is not yet quite right.”
Researchers say young people with the condition have varying stories. One teenager says it barely affects his daily life, while another person says it worsened her existing eating disorder.
Frasnelli continues to study parosmia but says he’s excluding minors. Getting their consent can be complicated, he says, and he’s been contacted more frequently about adult cases.
One of his challenges is trying to figure out why certain scents bother patients more than others. He and Kelly say common culprits are gasoline, coffee and frying meat.
“What we do know is that these are strong and complex odours,” Frasnelli says – and this would explain why the Asselins gravitate toward eating plain-tasting foods.
But there is much more to learn about parosmia patients of all ages, he says, and that starts with all health-care professionals taking this issue seriously.
The barrier of care: an unmet need for rehabilitation
The Asselins visited their family doctor to see what they could do to alleviate their symptoms, but Audrey-Anne says all he knew was that it was likely a symptom of long COVID.
After Marie-Eve reached out to Frasnelli for help, she says he sent some websites with information and because he doesn’t practise on patients, he told her to consult an ear, nose and throat (ENT) specialist. This is who gave the teens their parosmia diagnosis.
The specialist and family doctor suggested using a cortisone nasal spray (in case they had inflammation in their nasal passages), smelling essential oils and trying to eat small bites of food, even though they taste horrible. The Asselins tried all of this, but neither sibling has felt improvements.
Frasnelli says doctors, including ENT specialists, face many hurdles in helping patients with parosmia – they can recommend only so many treatments in most cases of the condition because how people perceive smells is different for everyone and there’s no all-encompassing test for parosmia.
“How does vanilla smell when you’re healthy? That’s such an individual thing,” he says. “We have to ask people, ‘Have you noticed that your sense of smell has changed? Are there odours that you used to like that now are different than before? Are there odours that everybody else likes but not you?’”
Kelly says “the problem is even if you have a diagnosis, what does that get you? Not really anything.
“Parosmia can’t be cured. Parosmia is subjective. It’s like a nothing diagnosis.”
Another issue is that doctors in general don’t know that much about the sense of smell because until the pandemic, they didn’t consider it important, Frasnelli says.
“I hope that we can change that,” he says. “There’s a lot of training and a lot of education to do. But part of this education is also to say we don’t know what we can do and we have to do more research.”
A spokesperson for SickKids Hospital in Toronto says they’ve seen around 10 patients experiencing post-COVID-19 parosmia throughout the pandemic.
Dr. Neil Chadha, a BC Children’s Hospital pediatric ENT – head and neck surgeon, says he has not seen parosmia as a common issue for children, but that could be because kids, depending on their age, may have trouble articulating their experience.
“Adults may be better at recognizing their symptoms and seeking help earlier,” Chadha says.
He says if a patient was referred to him, he’d look for other problems that may cause the smell distortion but once he comes to the point he thinks it’s because of the viral infection, he would follow the patient to recovery.
“The silver lining for all patients with olfactory loss is there’s so much attention and awareness in rehabilitation that wasn’t there before,” says Dr. Leigh Sowerby, an associate professor in the department of otolaryngology – head and neck surgery at Ontario’s Western University.
No cure, but there is hope
Frasnelli says anyone who thinks they have parosmia should first visit their doctor or a specialist so they can come up with next steps.
He also suggests doing a type of olfactory therapy called smell training, which is basically a workout for your nose that can help retrain your sense of smell. AbScent describes it as sniffing the same few scents every day, and Frasnelli says to do this for several weeks or longer.
Although the Asselin children had no luck with smell training over a span of a couple of months, a Laryngoscope study published in 2020 shows people who developed parosmia following a viral infection had better outcomes after using this method.
“Smell training is currently the best option,” Frasnelli says. “It doesn’t work for everybody, but it works better than not doing anything.”
There are few commercially available smell kits, but NeilMed Pharmaceuticals is debuting one in the U.S. and the company says it’s working on having it registered for sale in Canada. The kit may hit the shelves here as early as June, and people of all ages can use it.
Chadha says in lieu of a kit, you can even use items with strong scents you’d find around the house, including lemons.
The downside when it comes to kids, though – especially younger ones – is they may not want this as part of their routines.
“Parents I’ve talked to are tearing their hair out because their children have shown no interest in smell training,” Kelly says. “You just can’t force that.”
She says to avoid trying any parosmia “cures” people are peddling on social media, as these may not be scientifically proven.
Experts also recommend getting vaccinated against COVID-19. Sowerby says most of the patients he sees with post-viral olfactory loss are unvaccinated.
Marie-Eve’s whole family is vaccinated now, but when Olivier and Audrey-Anne contracted COVID-19 early last year, they weren’t eligible for their shots yet.
Both children say their parosmia has plateaued. Audrey-Anne says some of her menu mainstays are toast, oatmeal, yogurt and fruits.
“Parents should recognize it’s better for the child to eat something rather than nothing,” Kelly says.
Marie-Eve checks the Facebook support groups for people with the condition, where they share their stories and parosmia-friendly recipes. She says the hope that something could eventually help her children keeps her going.
Sowerby and Frasnelli say the condition is actually a symptom of regeneration in the body and can be the first sign of recovery. Chadha adds that children are better than adults at nerve-injury recovery, and this seems to be the case with olfactory conditions.
Although there’s a lack of available data to pinpoint an exact timeline for improvement, Chadha says he expects most children to recover from parosmia within six months.
Frasnelli says he sees more people with parosmia from the first few waves of COVID-19 than the later ones.
“Problems are less prevalent,” he says. “There are much fewer people who complain about the sense of smell. But it took us a while to understand that with the original variants, so we’ll see how this develops with the Omicron variants.”