COVID-19 has robbed her of her childhood and now she lives with constant pain
When 13-year-old Rose Lehane Tureen became ill early in the pandemic, doctors told her children they couldn’t catch COVID. Today, she still has long-term symptoms.
Michelle Hanks, USA TODAY
Rose Lehane Tureen is a busy teenager.
The 16-year-old is class president, Irish tap dancing champion, singer, cross-country runner and a straight-A student at her high school in Maine.
Her successes contradict the fact that she has suffered from debilitating headaches for more than four years, one of the many long-term symptoms of COVID that she has struggled with since becoming infected in March 2020.
Early in her illness, Rose went to the emergency room half a dozen times and was hospitalized twice with dizziness and splitting headaches. She also had red and swollen fingers, toes and ears, peeling skin, joint pain, trouble regulating temperature and terrible dreams.
She has lost years of her life due to Long COVID and is trying to make up for it.
“I had to decide whether I was going to waste away on the couch in the dark or I was going to persevere and do things that made me happy,” she said. “I’m going to take back what I needed to do that and try to live my life.”
Rose is one of an estimated 5.8 million children in the U.S. who have long COVID. Many of them have gone undiagnosed because doctors, parents and patients don’t recognize the constellation of symptoms, experts say. A new study funded by the National Institutes of Health aims to provide information to families and identify the most common long COVID symptoms in school-age children and teens.
“Children are not just little adults,” said Dr. Melissa Stockwell, study co-author and division chief of child and adolescent health at Columbia University. The better doctors understand how long COVID affects people at different ages, the easier it will be to diagnose children and get them prompt help.
Long-COVID children: Most of them are getting better. Doctors are worried about those who are not.
Long-COVID symptoms in children and adolescents
The study included 5,300 younger school-aged children and teenagers from more than 60 health care facilities across the United States between March 2022 and December 2023.
Researchers found that teenagers ages 12 to 17 were more likely to report fatigue, pain and changes in taste and smell, while younger schoolchildren ages 6 to 11 were more likely to experience difficulty concentrating, sleep problems and stomach upset, according to the report published Wednesday in JAMA.
Symptoms of Long-COVID affected nearly all organ systems, and most patients reported symptoms affecting more than one part of their body.
In the report, younger school children and teenagers commonly reported back or neck pain, headaches, lightheadedness or dizziness, and difficulty with memory or concentration. The study authors were also surprised that the common symptoms among the younger children were phobias, particularly fear of crowded or enclosed spaces and refusal to go to school.
Symptoms seen in younger children were less likely to overlap with symptoms seen in adults with long COVID, the authors said, highlighting the importance of age-based research.
“The symptoms that make up the research index are not the only symptoms a child can have, and they are not the most severe, but they are the most predictive in determining who may have long COVID,” said Dr. Rachel Gross, the study’s lead author and associate professor of pediatrics and population health at New York University Grossman School of Medicine.
Rose could have benefited from this research in 2020. It took her more than a year to find doctors who took her symptoms seriously. She finally found that team at Boston Children’s Hospital.
“I just ran in a junior Olympic qualifier and haven’t been able to run since,” Rose said. “It was dramatic and confusing.”
Missing “whole boat” of data
Despite the new research, health experts say much is still unknown about Long COVID.
For example, most of the data from the study comes from patients infected with earlier COVID-19 variants, not the latest version of Omicron, said Dr. Alexandra Yonts, pediatric infectious disease specialist and director of the Post-COVID Program at Children’s National Hospital in Washington, DC
The study suggests that children infected with Omikron are less likely to develop Long COVID. However, Yonts argues that there is not enough data to support this theory because Omikron has not been on the market long enough to provide robust data on Long COVID.
“When we look at children who have been newly infected, what is their risk of developing long Covid?” she said. “We are missing the whole thing.”
The authors of the JAMA study say their next research will look at long-term symptoms of COVID in children under 5. Yonts said these patients especially need access to post-COVID clinics that specialize in identifying and treating lingering symptoms of COVID-19 infection. She said these types of efforts are gradually being phased out across the country due to a lack of funding and support.
“These are such complex patients,” Yonts said. “It’s hard to find a multidisciplinary team that can define these symptoms and support them.”
So Rose, a California native, eventually moved her family to southern Maine so they could be within driving distance of Boston Children’s Hospital, where she visits the Long COVID clinic at least once a month. In addition to doctors at the hospital’s specialized COVID clinic, she has seen nearly a dozen specialists, including a sleep neurologist, acupuncturist, gastroenterologist, endocrinologist, rheumatologist and cardiologist.
Rose is disheartened that clinics will have to close to patients like her after COVID, but not entirely surprised. She sees the world moving on from the pandemic, but she’s still in pain. She hopes the JAMA study will bring new attention to the disease.
“Now there is an illusion that the lockdown is over and COVID is gone,” she said. “That is really, really difficult and debilitating for anyone with long COVID – especially children.”
Adrianna Rodriguez can be reached at [email protected].
