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the lonely world of long covid in children

no one really knows how many children are affected by persistent symptoms that can last months or even years after a covid-19 infection.

the lonely world of long covid in children
jessie-lynn macdonald says her son, finlay "really hasn’t been himself" since contracting covid-19 last year. jean levac / postmedia
by: elizabeth payne
finlay macdonald was 10 when he became infected with covid-19, about a year ago.
the infection started with a rash that ran up his neck, followed by deep fatigue and severe gastrointestinal issues, among other things. over time, those symptoms changed somewhat but they never really went away.
today, the kanata boy still struggles with headaches, tinnitus and stomach pain.
“he really hasn’t been himself since,” his mother jessie-lynn macdonald said.
finlay is one of hundreds, if not thousands, of canadian children with long covid, characterized by persistent symptoms that can last months and years after a covid-19 infection. no one really knows how many children are affected, but some research suggests around four per cent of children who have had covid-19 will experience lingering symptoms.
the numbers are believed to be higher, around 10 per cent, in adults, according to the world health organization. up to 25 per cent of people will experience symptoms for at least a month.
a report released by ontario’s covid-19 science advisory table on tuesday estimates that between 57,000 to 78,000 ontario residents have experienced or are currently experiencing post covid symptoms. long covid, the report found, can entail some of 200 reported symptoms, including shortness of breath, pain, sleep disturbances, anxiety and depression.

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while more is beginning to be understood about post covid-19 condition — or long covid — in adults, it still remains poorly understood in children.
that has made it difficult to find medical professionals who can help with finlay’s symptoms.
“it sure would be nice to have some direction. it is lonely when i don’t know who to call,” macdonald said. that lack of understanding is making an already difficult time even tougher.
between lockdowns and his illness, finlay missed in-person school most of last year. his return to a new school this year has been anything but smooth.
because his long covid symptoms can be similar to covid-19 symptoms, he was sent home this week after developing a headache and feeling nauseated. macdonald said she has explained the situation to school officials and they have been sympathetic, but are also looking for public health guidance about what to do.
a spokesperson for the ottawa catholic school board said it would like some guidance from medical professionals.
“if ottawa public health or a doctor can explain the reasons behind symptoms, we would work with oph to develop solutions so the student could attend school,” spokesperson sharlene hunter said. “in all matters covid-related, we take our direction and guidance from the medical professionals.”

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as of late tuesday, the school board had received guidance from ottawa public health, “so, hopefully the journey forward will be a little smoother,” macdonald said.
she said it had been difficult to find medical professionals to treat finlay’s range of symptoms because so much is unknown about long covid, especially in children.
“it is so frustrating,” macdonald said. “i wish there was a medical team where you could go to them and they could guide us.”
meanwhile, she said she can’t take her son for testing every time his long covid symptoms appear.
“he needs to be in school for his mental health. it has been pretty isolating.”
the number of people — adults and children — who struggle with long covid is likely to grow.
suzie goulding, a long covid sufferer from oakville, ont., who started both an adult and children and family’s support groups, says there have been many new members in recent weeks, especially from alberta, which has the highest number of cases in the country right now.
she says the canadian government has, generally, been slow to react to long covid and that is magnified when it comes to children.
“we need to be proactive and jump on the issues at large especially the information of long covid in children. this is critical to be able to provide safety measures within schools and for parents to take the correct measures to understand the situation and better assess and how to protect their children.”

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there are currently 209 members in the long covid kids support group, goulding said.
the science table brief released tuesday, meanwhile, acknowledged there is still limited knowledge about how long covid affects children, especially where new variants are concerned.
“systematic reviews of sars-cov-2 in children have described mild disease and generally good outcomes in this population. the prevalence and characteristics of the post covid-19 condition in children however, is less understood.”
one uk study found that 4.4 per cent of infected children experienced prolonged symptoms 28 days after infection and 1.8 per cent experienced symptoms at least 56 days after infection.
the science table concluded that: “health resource planning, management strategies and relevant government polices will be required” to manage the burden of long covid on “patients, caregivers, the health care system and the province overall.”
right now, macdonald can only dream about that kind of support.
a single mother, she said the struggle of caring for her son and trying to find medical advice and support is exhausting.
“as a parent, it is hard because we are supposed to make our kids feel better, we make soup and we cuddle them. after a year, it is hard and it is scary.”

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