• Fri. Jul 1st, 2022

Canadians establish support group for children with long-term COVID-19, call for more research

TORONTO – She was an avid hockey player and long distance runner, but now 15-year-old Kayleigh McCue’s active life has slowed at a breakneck pace.

McCue is struggling with a syndrome that follows infection with COVID-19, one of the growing numbers of children and adolescents who present with what appears to be a pediatric version of long-haul COVID-19.

“It really stresses me out that I don’t know what’s going on, and it’s scary,” she told CTV News.

McCue was ill for three weeks last fall with COVID-19, experiencing a fever and general malaise. His father, Chris, and a brother were also struck by the virus.

But she was the sickest.

“I had like, pretty much every symptom that there was,” she said. “Nausea, vomiting, headache, shortness of breath, loss of taste, loss of smell – most of the symptoms.”

Her mother, Desiree, told CTV News that while other family members simply felt sick and had headaches and fatigue, the 15-year-old struggled more.

McCue improved somewhat, but then developed fatigue, vomiting, and a weird rash in the spring.

“The ones on the face look like scratches,” Desiree said of the rash. “The others looked like sort of bruises.

“We were terrified because it was all over his chest, his neck, his face. In fact, she turned around and said, “Mom, I feel like a freak. “

The family first noticed it in March. When the symptoms worsened, they took her to a doctor, who ordered blood tests to be done.

But everything is back to normal.

Doctors had no answers, some even blaming self-harm. But her mother says she saw the rashes appear on their own while McCue watched TV.

McCue felt abandoned, with no one to believe her.

“As a parent, [it] breaks your heart, ”her mother said. “It was a struggle. And she’s had more panic attacks, which is – I’m not surprised. They tell her that she is hurting herself.

McCue had to start attending school part-time while his family doctor searches for a specialist in Canada to solve the mystery.

And it turns out that many other families are in the same situation.

Support groups are now emerging in the UK, US and now Canada called Long COVID Kids Canada, which now has almost 100 members and is growing, with some reporting symptoms similar to McCue and others with issues. additional, including difficulty walking, seizures and fainting. spells.

The support group’s online accounts were created by Susie Goulding, who also suffers from long symptoms of COVID-19.

“There is a great demand for support for these children,” Goulding said. “We are seeing more and more children showing long-term symptoms. “

Although long-term COVID-19 cases in children in Canada have already been documented – with several families sharing their stories with CTVNews.ca last summer – Canada has little data on how often it could to be.

According to Long Covid Kids, data from England revealed that out of around 617,000 children who tested positive for COVID-19, around 50,000 children aged 0 to 19 still suffered a 12-week long COVID-19.

Goulding said it sometimes takes a while for families to link symptoms to a mild case of COVID-19 that a child may have had months earlier, especially since if a case was not serious , parents would not expect it to persist.

“They didn’t start having severe cases with respiratory problems that would lead to hospitalization, but in fact some of these asymptomatic cases can end up being long COVID cases and end up having devastating effects,” a- she declared.

“We hope that by having this group, we can reach more people. Canada appears to have fallen far behind in its struggles and in seeking support for long-haulers, even with adults. “

McCue’s mother joined the Canadian group. She said that after sharing her daughter’s experience, they received an overwhelmingly positive response from others dealing with similar cases.

“The responses we got, I was screaming with my eyes and so was she,” she said.

“Other people say, ‘Yes, we were told my daughter was harming herself, yes, we saw it, yes, you are not alone. “”

Connecting patients to each other is the first step. The second? Use their numbers to raise awareness and mobilize medical aid.

Currently, few physicians in Canada are focusing on this brand new disease.

CS Mott Children’s Hospital in Ann Arbor, Michigan, is among the first in North America to set up a specialist clinic for long-range COVID-19 in children.

Hospital pulmonologist Dr Ixsy Abigail Ramirez told CTV News they started receiving many referrals from family doctors in the spring of 2021, and those referrals were often from children who had never had any problems. serious health problems.

“They are healthy people [kids], mainly adolescents, who are referred to us because they usually suffered from shortness of breath, ”she said. “And so they were referred to our lung clinic for that.

As the number of referrals increased, they found themselves having to consult more specialists in other fields to deal with the problems presented by the children.

Ramirez said they set up the clinic to provide this comprehensive care.

“I mean there are still a lot of strangers out there,” she said. “These are previously healthy children who were doing their daily activities while playing and suddenly have this limitation in their daily activities.”

The clinic has treated several hundred young patients over the past two months with steroids for breathing problems and physiotherapy. They have a team of specialists on staff.

Ramirez said shortness of breath is the main thing patients notice.

“This is the most common kind of lasting effect,” she said. “Chest pain can sometimes be another common symptom, along with fatigue. “

The clinic has only been around for a few months, so doctors are still catching up and finding a path to recovery. So far, they have found that most symptoms persist in children with long-term COVID-19.

“Most of the patients that we have, the symptoms persist at this point,” she said. “So we don’t yet know if there will be an end point for some of these patients in terms of how they feel with these symptoms.”

How long COVID-19 has spread among children and how to find an end point are serious questions. Because children are much less likely to suffer severe consequences from COVID-19, their struggles have not been the center of attention. But depending on the number of children affected by long-distance COVID-19, the problem could be huge – nearly 270,000 children aged 19 and under have contracted COVID-19 at some point in Canada.

Ramirez and his clinic hope to conduct studies to find answers to the many questions about the long COVID-19.

“Will it ever get better, or is it – I hate to use the expression, but – is this my new normal?” Ramirez said he was asked. “We really don’t have a good answer for these families. “

This uncertainty is something Desiree struggles with.

“When it’s your baby and you don’t know how to help her, you just… I ended up having to consult, because I felt helpless,” she said.

She added that the * three other children in the family asked if their sister would be okay.

“I kept showing a brave face, [saying] “Yes,” she said. “But all the while, I was walking away and crying, because I’m like, I don’t know.”

Canadian children also need help and recognition, which support groups hope to draw attention to.

“We were just calling on government groups to notice and recognize that children are suffering and suffering from COVID, as well as becoming long haulers themselves,” Goulding said.

“That’s what we hope – even a child can see something like this and say, ‘Hey mom, I’m not alone. “And the more people speak out, the more you know, maybe doctors and government can put their weight on it and help us,” Desiree said.

Still McCue says she finds solace in the growing number of young people coming forward.

“I felt a little bit of relief because other people are going through the same things,” she said.

“I want more doctors to believe it, because it’s not like [we’re] by hurting ourselves, we were just sick and we don’t know why, ”McCue said. “So we try to understand. I want more doctors to believe it.