Parents of kids with long-COVID warn that children can develop severe symptoms

Parents whose children have developed long-haul cases of COVID-19 are urging others not to underestimate the virus's impact on kids as they prepare for the return to class this week.

Doctors and other health-care workers who treat kids with long-COVID are also calling for more attention to the risks faced by the under-12 set, who can't yet be vaccinated while the delta variant fuels a fourth wave of the pandemic.

They say that even seemingly mild cases of COVID can lead to prolonged illness in kids, despite the predominant message heard throughout the pandemic that children are only modestly affected.

Dr. Anu Wadhwa, a pediatric infectious diseases staff physician at the Hospital for Sick Children in Toronto who has been treating and studying children with long-COVID, says the symptoms can last for months.

"Most of the children we're following had pretty mild disease that pretty much resolved the way you expected it to," Wadhwa told White Coat, Black Art host Dr. Brian Goldman.

"However, either certain symptoms lingered and persisted or [the kids] had a period of feeling well — and went bike riding for a day or two — and then started to feel worse again," said Wadhwa, who is also an associate professor of pediatrics at the University of Toronto. "So it seems very typical that even with mild infection, some of these kids are getting very pronounced, persistent symptoms."

Those symptoms include things like joint pain, fatigue, shortness of breath and — perhaps most difficult to treat — brain fog. 

One girl Wadhwa treated was taking an extra two hours a night to complete her school work, for instance.

A turn for the worse

A study published in The Lancet Child & Adolescent Health in August tracked more than 1,700 children in the U.K. who tested positive for COVID-19. Nearly two per cent had symptoms that lasted more than 56 days.

Though that may sound like a small percentage, Wadhwa points out that if a lot of children are infected, a good number of them could be affected by long-COVID.

Of the nearly 1.5 million Canadians who have had COVID-19 so far, 287,204 of them were under age 19.

Cathy Smyth's 11-year-old daughter, Alyssa, was among them. When everyone in the household contracted the virus in October 2020 — including her older sister, Emily — Alyssa didn't seem at first to be significantly affected, Smyth told Goldman.

"[Alyssa] was having a pretty average time with COVID. She was coughing, [she had a] very bad sore throat. She lived off of Freezies for a full week," said Smyth, who lives in Orangeville, Ont. "But then on the ninth day, she crawled into my room — her hands, feet and face had swelled up."

They contacted public health and were told to take Alyssa to their local emergency department.

"They did lots of blood work ... [They] told us to monitor her, give her Benadryl. It took about five days for the swelling to go down and where she was comfortable enough she could put shoes on again."

But that was just the start of Alyssa's problems. 

"She had a big problem with her asthma about three or four weeks after," said Smyth. After a number of chest X-rays, the family was warned that Alyssa's symptoms could linger.

Alyssa wasn't accustomed to being held back by asthma. A competitive swimmer who once ranked in the top 50 in Ontario for girls under 13, she was now struggling with sore joints when she was in the pool.

"I had to take breaks and, like, because of my knees hurting, I had to do pull, but then my shoulders would hurt, so that I would have to do kick," said Alyssa.

Smyth said that while online learning was challenging for any kid, it was made more difficult for Alyssa by the struggle of "just keeping her focus and remembering things."

Not only that, but Alyssa still has the insomnia that plagued her entire family when they all initially got the virus.

'We expect that you will get better'

Smyth herself is a long-hauler who is still experiencing symptoms, while her husband Sean's COVID-19 case was resolved after a short time. Because she and Sean joined a study on long-COVID that's being conducted at Toronto General and Toronto Western hospitals, they heard about getting a referral to a new long-COVID clinic at Sick Kids.

That meant seeing Dr. Wadhwa, who officially diagnosed Alyssa with long-COVID.

"She has slowly marched towards improvement… which is also encouraging that maybe, over time, this will settle down," Wadhwa said. "Can we find a way to make it settle down faster, make it less difficult for families and children? I think that's our goal at this point."

Wadhwa said a big part of helping long-COVID kids involves providing reassurance to both them and their parents. She and her colleagues explain to families that while it's not known yet exactly what's causing some COVID patients to develop long-haul cases, "we do know based on what we're reading in the literature, what we're seeing in children, so far, the trajectory is towards improvement, so we expect that you will get better."

She and her colleagues then see how they can help manage the most bothersome symptoms, such as asthma, pain or insomnia, and refer patients to gentle physical or occupational therapy to help them "get off the sofa and do a little bit more each day."

That's the kind of support Edmonton resident Jessica Gates has been desperate to access for her eight-year-old daughter, Miranda.

Since both Jessica and Miranda got COVID in December 2020 — starting with Miranda contracting the illness at school — both have had debilitating, lingering symptoms. Miranda suffers from severe nightly stomach aches, which lead to episodes of vomiting about once per week, said Gates.

"I've taken her to the doctor and the doctor is just kind of brushing it off. He doesn't think it has anything to do with COVID," she said. Instead, Miranda's doctor has diagnosed her with a condition called abdominal migraines, and told Gates to give her daughter ibuprofen to treat the problem. It hasn't helped.

Edmonton does have a long-COVID clinic, but Gates has not been able to get a referral to it for Miranda. 

Canada's response lagged, advocate says

Susie Goulding, founder of the Covid Long-Haulers Support Group Canada and director of Long COVID Kids Canada, a non-profit support network, said Canada has lagged behind other countries in acknowledging long-COVID in general, let alone its effect on kids.

Goulding notes that while the U.K. was establishing clinics to treat long-haul cases in November 2020, it wasn't until this July that Theresa Tam, Canada's chief public health officer, first acknowledged that a long-haul syndrome existed. 

"And then in December, the United States allotted $1.15 billion to the care in aid of long haulers," said Goulding.

CBC reached out to the Public Health Agency of Canada for comment, but did not hear back before deadline.

Compounding the difficulty in seeking diagnosis and support for children is the narrative that was established at the start of the pandemic, she said. "The focus was on the elderly and the mortality rates, and everybody else, they seemed to think that, if you had COVID, then you would recover, and that these were mild cases and that children were rarely affected."

Goulding points out that the delay in understanding that long-haul COVID may affect kids could also be tied to the fact that "children were sort of sheltered" when schools in much of the country were quickly shut down.

"The problem is that, with not even acknowledging and letting people know that this is a possible result of having COVID, then they don't take the necessary precautions, you know, and they don't believe that it is as bad as it is." 

Alyssa Smyth has improved considerably in the last few months, after various complementary treatments, including physiotherapy for her lungs, which her mom said the physiotherapist described as "like concrete" following COVID-19. 

With students returning to class, Cathy Smyth urges other parents not to downplay the risks of COVID.

"We took it seriously — and we still got it." 

Written by Brandie Weikle. Produced by Amina Zafar, Jeff Goodes and Colleen Ross.