She’s 8 and living with long haul COVID. ‘I can’t just be a kid.’
Addie Lanthorn dressed as Elsa from Disney’s “Frozen” on Halloween. The night was mild and skies were clear so the pain that often consumes Addie’s 8-year-old body was minimal.
When it’s cold and rainy, it’s hard to breathe and her feet hurt so bad she can barely move — like an adult with arthritis. She takes the anti-inflammatory drug Naproxen every 12 hours for relief.
But after 16 minutes of trick or treating around her Waxhaw neighborhood, Addie was exhausted. She was winded and could barely stand.
The princess in her flowy white and purplish-blue dress was forced to call it a night.
“I still got loads of candy,” said Addie, the toughest and oldest of four children. “Snickers, Milky Way and Ring Pops are my Top 3.”
These moments of normalcy are sweet for the third-grader who loves to dance, paint, and play with her siblings and family’s cats. Birthday parties, putting on socks and shoes, walking — none of it has been routine since a doctor last month diagnosed her with post-acute sequelae of SARS-CoV-2. That’s the complicated scientific label for what people now just call “long COVID” or long haul COVID.
“About three weeks after she ‘recovered from COVID-19’ she started having issues with breathing,” her mom Sara Lanthorn said. “It quickly grew from sporadic to covering most of her day where she couldn’t even make it up the stairs without a coughing fit and gasping for air. She was also having rapid heartbeats and overall body aches.”
Before coming into contact with the virus, Addie had no health issues or pre-existing conditions, her family says.
Addie tested positive for COVID-19 on Aug. 31 — the peak of the Delta coronavirus strain’s surge among children in North Carolina.
Her journey as a COVID “long hauler” has been excruciating and scary. Research is underway into why some adults and children experience life-altering symptoms after they’ve been infected. The closest pediatric clinic for those children with ongoing complications from COVID is at Kennedy Krieger Institute in Baltimore.
Although medical research has been limited, some experts say young children are less likely to have long COVID than adults, but that’s little solace for families living with it.
In North Carolina, state health data shows just over 1 out of every 10 known coronavirus cases since March 2020 have been in children age 14 or under, for a total of nearly 182,000 cases. While that figure represents close to 18 months worth of data, close to 42% of all cases in that age range came in a two-month period between late July and late September this year.
Locally, the trend has been similar. An Observer analysis of Union County COVID-19 case demographic data shows that 40% of all positive COVID tests among children up to age 14 since the start of the pandemic happened between July and September. Union County saw 2,241 cases in that time frame in children in that age group.
Children and pre-teens were contracting COVID at higher rates just as communities nationwide were resuming school with in-person learning.
With those risks, most school districts in North Carolina made wearing masks indoors mandatory for all students and adults in schools. But not Addie’s.
Many who argue against wearing masks in schools point to the relatively low mortality rate among children or point to older, cumulative pandemic data that’s skewed by the reality that children were less likely to be infected by earlier strains of the virus. In Union County, where Addie attends, school board leaders said they wanted families and employees to have the freedom to choose whether they wear masks.
Addie’s family says the debate over the polarized issue of masks in schools often has overlooked what happens to children when they survive COVID-19 and go on to have significant health problems.
The local school board’s decision to not require masks enraged Addie’s mother, along with many others who have protested in recent months. Those in favor of kids wearing masks could dutifully send their student to school with a face covering on — but whether they were really protected would be dictated by the choices of others.
Sara Lanthorn says the district’s lack of a mask requirement at the height of the Delta strain infecting children “took away their right to a safe environment.”
Long haul COVID in kids
Leading up to when school began Aug. 23 in Union County, the Lanthorns had done everything possible to protect their children from COVID-19, including getting themselves vaccinated. Both Sara and her husband got their booster shots last week. Addie masked up in school — but most classmates and many others in the building did not.
Addie’s bout with COVID-19 was relatively mild, her mom said. She never ran a fever, only complained of headaches and she returned to school after she cleared her 10 days. But lingering fatigue made it difficult for her to make it through her days. Then came the breathing problems and body aches.
Shortly after those symptoms, Addie started losing her toenails. The morning before she lost her first toenail she was hysterically crying, trying to put on socks and shoes to go to school, saying that it hurt really bad. At first, Sara thought she must have stubbed her toe, but she couldn’t remember anything happening. All of her toes began to hurt and she wore a boot to school the next day to keep the pressure off her toes.
She lost two more, including a big toenail. The skin underneath was so sensitive it would bleed. Over the course of the next week, she lost all 10 toenails. The doctor diagnosed her with COVID toes.
“She now has to take daily inhalers, including a rescue inhaler, Naproxen, and we have added collagen to try to help her nail growth,” mom said. “She still struggles with activity.”
Dr. John Baratta, the founder and co-director of the UNC Health COVID Recovery Clinic at the Center for Rehabilitation Care at Chapel Hill, says doctors still don’t know much about long COVID. Baratta also is a clinical assistant professor in the UNC School of Medicine.
“Anyone who gets COVID is at risk — both children and adults. Minimizing the risk of COVID-19 through masking, physical distancing, and vaccination is the best way to reduce the risk of long COVID.”
More than two months after her original COVID-19 diagnosis, she’s been unable to regrow her toenails because they’re so weak, catching and falling off again.
“It’s been extremely traumatic,” Lanthorn said. “She also had to miss about six weeks of dance and is just starting to go back with limited activity and lots of support from her instructors.
“For weeks, I had to wrap her feet every night for her to be able to sleep.”
Late Tuesday, vaccine advisers to the U.S. Centers for Disease Control and Prevention voted to recommend giving Pfizer’s vaccine to children ages 5-11.
Addie’s brothers are both scheduled to get their vaccines Thursday morning. Her parents will meet with Addie’s doctor about getting her the vaccine. The youngest Lanthorn child isn’t yet old enough.
Knowing precisely how or when an individual got infected with COVID is difficult. Lanthorn said she’s “100%” sure Addie caught COVID-19 from school, even though she was sent to school masked.
“That was to protect others,” Addie said, “not myself.”
‘Can’t just be a kid’
Addie is still experiencing headaches. Her taste isn’t back to normal and her sense of smell is weak. For her, the worst parts of having COVID-19 are “not being back to dance as much,” missing school and having more panic attacks.
“I can’t just be a kid,” she said. “It’s hard to run around, and I need to take breaks.”
Recent estimates suggest that 10% to 30% of adult COVID-19 survivors will have lingering symptoms consistent with long COVID, Baratta said. Long COVID is generally classified by doctors and researchers as a person who contracted COVID and then stays sick or develops new symptoms for a month or more after testing positive.
“There has been recent, growing interest in long COVID in children,” Baratta said. “It is likely related to the recent Delta wave which affected children to a greater degree than the earlier COVID waves.”
The U.S. National Institutes of Health’s National Library of Medicine published the first study of long COVID in children, and it suggests that more than half of children between the ages of 6 and 16 who contracted the virus have at least one symptom lasting more than 120 days, with 42.6% impaired by these symptoms during daily activities.
In some cases, children may feel worse and have more serious symptoms with long COVID than they did initially from the virus, the study states.
“(There’s) an immense amount of stress on us as parents and our family unit as a whole,” Lanthorn said. “First the stress of trying to get us through it originally and keeping the other kids from getting it, then the stress of managing the emotional toll it took on everyone, and now the stress of not knowing what’s going to happen with her and if she will have lifelong issues because of this.”
Lanthorn and her daughter help ease the stress by focusing on educating the community. Addie, whose prognosis is uncertain, wants her voice to be heard so she can help raise awareness of the effects of Long COVID in children.
“Toenails can fall off, you can have a lot of trouble breathing and can’t do as much of the things you want to do,” Addie said. “(I want people to know) that it can happen later and you might not know what’s going on.”
Her mom says the unknown future of long COVID symptoms is almost as terrifying as the pain Addie has.
“Just because children seem to do ‘OK’ during COVID-19 does not mean that damage is not being done to their bodies,” she says.
When she made it back to school this fall, Addie started a group with a handful of friends to meet and have difficult conversations. It’s a club — a safe space — for the children to talk about whatever pain or problems they face.
They call it “The Painful Club.”
This story was originally published November 4, 2021 at 6:00 AM.
