Second in a series of two posts by an Alberta mom.
Find the first post here: No One Is Listening To Me
Image: The Rona Lisa by Rosie Pidgeon, a young Belfast art student living with Long Covid. To view her artwork, please visit @art_byrosie_
Alberta Long Covid Kids
During the Delta wave in October 2021, my son woke up with a cough and I knew right then it was Covid. The previous night the school had notified us of two known cases in his second grade class.
He got through the first week fine but what followed was not normal.
For close to a year my son was fatigued after school. When he got home each day he sat on the couch or laid in bed until bedtime, except to eat supper. When we went to the park on weekends, he played for 20 minutes then laid on a park bench until we left, or we’d walk home so he could rest. He slept 12 hours a day, as much as he did when he was a baby. He was constantly sick, puking or had diarrhoea. He missed over a month of school that year. I kept telling people “I think Covid wrecked his immune system”. No one believed me.
A few months after his Covid infection he had chest pains while sitting in his desk at school. His chest x-ray came back normal so it was shrugged off as anxiety. His smell and taste were affected too. For my son this was definitely the worst part. Most of his favourite foods tasted “different”, “funny”, “bad” (his words) so he would only eat a few bites. Sometimes he couldn't smell at all and sometimes smells would bother him so much he had to eat alone in his room. We worked with a dietitian for a year to make sure he didn’t continue to lose weight. We went to an occupational therapist to try to help him regain his sense of smell. The woman we saw didn't seem to have much knowledge of Long Covid resulting in one session where she asked lots of questions, no follow up appointment and no help. It seemed like everyone we talked to (family, friends, the school, healthcare professionals) either didn’t believe this was the result of his Covid infection or didn’t know how to help us. We were constantly told “kids get sick”, “he seems fine”, “your wife talks about Covid too much”, and “she needs a therapist”. It took close to a year for him to mostly recover.
The guilt over my son getting sick at school kept me up at night. Why did I send him to in-person school before childhood vaccines were available? Why didn’t I insist he wear a mask? Why didn’t I listen to my gut and keep him home until the fall surge resulting from Alberta's “best summer ever” was over? This wasn’t my fault; the Chief Medical Officer of Health stood up on that podium preaching that kids don’t get Covid and even if they do, they don’t get that sick. The CMOH stood up on that podium and said Covid was spread by close contact so kids didn’t need to wear a mask in school if they were seated at their desk. The CMOH stood up on that podium and said kids don’t spread Covid as much as adults. The CMOH was wrong. I was misinformed. Covid is airborne, kids do get and spread Covid, and kids can get Long Covid.
Fast forward thirteen months to November 2022, when everything is now called Omicron and my first grade daughter brings Covid home from school. No sick policy, no exposure notifications, no mask mandates, no upgraded ventilation, no portable air cleaners at my kid’s school. Just two short months earlier I had tried, unsuccessfully, to donate HEPA filters to the school only to have the Facility Director block them, assuring me the ventilation was good and there was no need for them. I knew otherwise; I had been testing the air quality for nearly a year by that time. In fact, he falsely told the principal and my kids' teachers that HEPA filters increase the risk by blowing the virus around. That is not how HEPA filters work. They remove particulate matter from the air making it safer. But how could I get the school to listen to me now? Why would they go against the advice of their P. Eng?
Because we didn't know my daughter had been exposed, our whole house got Covid this time. With my son’s infection we prevented onward household transmission with multiple open windows, bathroom fans on, respirator masks on, no shared bathrooms, no shared bedrooms, and eating outdoors. Most people would be surprised to learn 70% of household spread starts with a child. Without this information why would they ask for sick policies, exposure notifications, mask mandates, improved ventilation and filtration in schools?
What followed was my family in crisis mode for months. My daughter developed Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) from her Covid infection. Her symptoms: Obsessive Compulsive Disorder (OCD), restrictive eating, child hoarding, emotional lability, insomnia, and suicidal thoughts. Imagine your child being fine when they go to school in the morning but when they come home later that day they are distraught; they have emptied the entire contents of the garbage and hid them all over the house. They are crying and screaming that you threw out their friends and hurt their feelings. This was terrifying. I had no idea what was going on. My daughter would get stuck in OCD loops repeating words, actions or routines for 2 to 3 hours at a time, she would cry because she didn’t know how to stop. At the worst of it, she stopped eating all but a few bites of food a day because she had a fear of pooping and later a fear of choking. She wouldn’t change her clothes or brush her hair for days on end. She would be in fits for hours, screaming, trying to escape the house yelling we didn’t love her and that she wanted to die. One particularly bad day I phoned my husband desperate for him to come home from work. Once he arrived home, he was able to get her calmed down. When I knew she was safe I went to my room and cried.
I had no idea how we were going to get through this. She couldn’t control what her brain was telling her and was terrified just as much as we were. Luckily, we were quickly connected to a pediatrician and child psychologist who both had experience with PANS. The child psychologist told me she had already treated a few kids with post- Covid psychiatric issues. Slowly but surely, each appointment with the psychologist would give our family the tools we needed to cope with one issue at a time. School was really hard for my daughter, there was too much noise and she couldn't concentrate. She couldn’t handle going to school full time or her symptoms would get worse. My daughter’s own explanation: “At first, at school it was hard for me. I felt like my head was gonna burst! Things got bad! It was hard for me to eat, it was bad. But we worked on it for a bit until it got a bit better.”
The school basically ignored us pretending she was fine. Meanwhile I was emptying the garbage from her backpack she was bringing home from school every day.
Family tried to blame us saying that our Covid precautions caused this. They didn’t care that multiple medical professionals told us this was caused by her Covid infection. The misinformation on masks has run so deep in society that people truly believe masks cause learning loss and psychological issues in children.
My children felt empowered when we started to wear respirator masks, they were doing something to protect themselves, their parents and vulnerable grandparents.
In the meantime, I have to answer questions like: Will my sister be like this forever? Why won’t Grandma and Grandpa wear masks? Don't they care what happened to me and my sister?
We’ve had to endure family sending us anti-mask propaganda, telling us they will never wear a mask again outside of a healthcare setting. Even while knowing what has happened to our kids.
An explanation of Long Covid and the risk of reinfection making my kids symptoms worse is often met with blank stares or someone rapidly changing the subject. No one wants to be reminded that Covid is still here and that some people have long term health complications from it. As a result, our family has been left out and left behind.
Most of society is in denial living their best life and pretending the last 3 ½ years never happened. But Covid is here to stay which means we as a society need to understand:
- Covid is airborne
- With every infection there’s a 10% chance of Long Covid (even higher in women), and
- We can prevent infection with indoor air quality standards, transparency and enforcement, mask mandates and staying home when sick.
What I've read in medical journals would shock the general population. Public Health is not informing people of the true risks of a Covid infection even though they’ve known about these risks for over two years.
In the two years since my family’s Long Covid journey began, I have learned:
- My son's altered sense of smell and taste is caused by brain damage and his constant illnesses for nearly a year are caused by immune dysregulation.
- My daughter’s PANS is caused by her own immune system attacking her brain instead of the virus, and that other infections like influenza and Strep A can cause this too.
My kids have what some prominent medical professionals call Long Covid Light because they are not bedbound or housebound. But I do not wish this on anyone. All I want to do is inform others of what can happen, how common it is, and how to prevent it. Right now we are failing our children, and we will continue to fail them until all schools and healthcare are safe.
The patient community has been through this before with PANS/PANDAS, advocating tirelessly for themselves whilst a few prominent medical professionals hindered the progress causing unimaginable suffering for the families affected by the illness. For all of us living with Long Covid, I am begging the medical community to learn from past mistakes.
