Canadians set up a support group for children with long-distance COVID-19, requesting more research
Toronto-She used to be an avid hockey player and long-distance runner, but now 15-year-old Kayleigh McCue’s active life has slowed down.
McCue is struggling with a syndrome after COVID-19 infection, which is just one of a growing number of children and adolescents who seem to have a remote pediatric version of COVID-19.
“It’s really stressful for me, I don’t know what happened, it’s scary,” she told CTV News.
McCue was ill with COVID-19 for three weeks last fall, with fever and general malaise. Her father Chris and a brother also contracted the virus.
But she was the most sick.
“I think, basically all symptoms are present,” she said. “Nausea, vomiting, headache, shortness of breath, loss of taste, loss of smell-most symptoms.”
Her mother Desiree told CTV News that although other family members just felt unwell, headaches and tired, the 15-year-old was struggling even more.
McCue improved, but then developed fatigue, vomiting, and a strange rash in the spring.
“Those on the face look like scratches,” Desiree said of the rash. “The others look like bruises.
“We were scared because it was all over her chest, neck and face. She actually turned around and said,’Mom, I feel like a monster.'”
The family noticed it for the first time in March. When the symptoms worsened, they took her to see a doctor, who asked for a blood test.
But everything returned to normal.
The doctor has no answer, and some people even attribute it to self-harm. But her mother said that when McCull was watching TV, she saw the rash appear on its own.
McCull felt abandoned, and no one believed her.
“As a parent, [it] It broke your heart,” her mother said. “This is a struggle. She has more panic attacks, which is-I am not surprised. They told her that she was hurting herself. “
McCue had to start school part-time, and her family doctor was looking for experts in Canada to solve the mystery.
Facts have proved that many other families are also in the same predicament.
There is now a support group called Long COVID Kids Canada in the United Kingdom, the United States and Canada. The group now has nearly 100 members and is growing. Some have reported similar symptoms to McCue, and some have other problems. Problem spells including walking, epilepsy, and fainting.
The online account of the support group was established by Susie Goulding, who has also been struggling with the long-term COVID-19 symptoms.
“There is a great need for support for these children,” Goulding said. “We found that more and more children have long-term symptoms.”
Although long-distance COVID-19 cases among Canadian children have been recorded before-there are several families Share their story with CTVNews.ca last summer — Canada has little data on how common this may be.
According to Long Covid Kids, data from England found that of the approximately 617,000 children who tested positive for COVID-19, there were approximately 50,000 children aged 0-19 Still experiencing a long COVID-19 In 12 weeks.
Goulding said that sometimes it takes a while for families to associate symptoms with mild cases of COVID-19 that their children may have had a few months ago, especially because if the case is not serious, parents don’t expect it to persist.
She said: “They did not have cases of severe respiratory disease that would lead to hospitalization at the beginning, but in fact, some of these asymptomatic cases may eventually become cases of long-term infection with new coronary pneumonia and ultimately have devastating effects.”
“We hope that with this group, we will be able to reach more people. It seems that Canada has fallen far behind in seeking support for long-distance transporters, even adults.”
McCue’s mother joined the Canadian group. She said that after she shared her daughter’s experience, they received strong responses from others who were struggling with similar cases.
“The answer we got was that I cried, and so did she,” she said.
“Others said,’Yes, we were told that my daughter is hurting herself, yes, we have seen this, yes, you are not alone.'”
Connecting patients with each other is the first step. second? Use their numbers to raise awareness and mobilize medical help.
Currently, few doctors in Canada pay attention to this very new disease.
CS Mott Children’s Hospital in Ann Arbor, Michigan was one of the first hospitals in North America to establish a long-distance specialist clinic for children with COVID-19.
Dr. Ixsy Abigail Ramirez, a pulmonologist at the hospital, told CTV News that they will receive a large number of referrals from family doctors starting in the spring of 2021. These referrals are usually for children who have not previously had serious health problems.
“These are healthy [kids], Mainly teenagers, they were referred to us because their most common is shortness of breath,” she said. “So they were referred to our pulmonary clinic.
As the number of referrals increased, they found that they had to consult more experts in other fields to solve the problems faced by the children.
Ramirez said they set up a clinic to provide comprehensive care.
“I mean there are still many unknowns,” she said. “These used to be healthy children. They played every day, but now suddenly they have this kind of restriction on their daily activities.”
In the past two months, the clinic has treated hundreds of young patients with respiratory problems and physical therapy with steroids. They have a team of experts.
Ramirez said that shortness of breath is the main problem that patients noticed.
“This is the most common lasting effect,” she said. “Chest pain can sometimes be another common symptom, or it can be fatigue.”
This clinic has only existed for a few months, so doctors are still catching up and looking for a way to recover. So far, they have found that most of the symptoms are in children who have struggled with COVID-19 for a long time.
“The symptoms of most of the patients we have are still lingering at this point,” she said. “So we don’t yet know whether some of these patients will have an end to their feelings in these symptoms.”
How long is COVID-19 common in children and how to find the end point is a serious question. Since children are much less likely to suffer serious consequences from COVID-19, their struggles are not the focus. However, depending on how many children are affected by long-distance COVID-19, this problem can be significant—at some point in Canada, nearly 270,000 children 19 and under were infected with COVID-19.
Ramirez and her clinic hope to conduct research to find answers to many questions about long-term COVID-19.
“Will it get better, or is this—I hate using the word, but—is this my new normal?” Ramirez said someone had asked her. “For these families, we really don’t have a good answer.”
This uncertainty is the problem facing Desiree.
“When it was your children, you didn’t know how to help them, you just—I eventually had to go to the consultation because I felt helpless,” she said.
She added that the other* three children in the family have asked their sister if they will get better.
“I just kept putting on a brave face, [saying] ‘Yes,'” she said. “But at the same time, I’ll walk away, and I cried, because I’m like, I don’t know. “
Canadian children also need help and recognition, and support groups want to get people’s attention.
Goulding said: “We are just calling on government groups to notice and acknowledge that children are suffering, they are suffering from COVID, and they themselves have become long-distance transporters.”
“This is what we hope-even a child who sees such a thing will say,’Hey mom, I’m not alone.’ As more people speak up, the better you will learn about doctors and the government. May fully support and help us,” Desiree said.
McCull still said that she found comfort in more and more young people coming forward.
“I feel a little relieved because other people are experiencing the same thing,” she said.
“I hope more doctors believe it because it doesn’t look like [we’re] To hurt ourselves, we are just sick, and we don’t know why,” McCull said. “So we are working hard to solve this problem. I hope more doctors believe this. “