R3 Seminar Recap: Characterizing Long COVID during early childhood

The study revealed that children as young as 0 to 5 years old can develop Long COVID, and that their symptoms can differ significantly from those seen in older children and adults. In addition, infants and toddlers (aged 0 to 2) tend to show different symptom patterns than preschool-aged children (aged 3 to 5). To support future research, the study team developed 2 tools called research indexes that can be used in future research to help identify Long COVID in these age groups.

Improving understanding of Long COVID in early childhood 

Dr. Gross (New York University School of Medicine) shared that early on, many people assumed that children were unaffected by Long COVID—or that if they did experience it, their symptoms would be the same as those seen in adults. However, existing and current RECOVER research challenges both assumptions. In 2024, RECOVER researchers published a review article confirming that children can experience Long COVID. A prior RECOVER study also found that school-aged children (aged 6 to 11) are likely to experience different Long COVID symptom patterns than adolescents (aged 12 to 17). However, questions about Long COVID across the lifespan remain, and symptoms in younger children were largely unstudied.

A new RECOVER study was designed to address this gap by following young children over time through their SARS-CoV-2 infection, the virus that causes COVID-19, and recovery, explained Dr. Thaweethai (Massachusetts General Hospital). To better understand symptom patterns, the team surveyed parents and caregivers about symptoms that lasted a long time in young children and compared responses between children who had tested positive for COVID-19 and those who had not. Their findings revealed distinct symptom patterns by age among children who had tested positive for COVID-19:

• Infants and toddlers (aged 0 to 2) more commonly experienced 6 symptoms for a long time: fussiness, dry cough, wet cough, trouble sleeping, poor appetite, and stuffy nose.
• Preschool-age children (aged 3 to 5) more commonly experienced 2 symptoms for a long time: daytime tiredness/sleepiness or low energy, and dry cough.

To support future research, the team developed age-specific Long COVID research indexes for identifying young children with Long COVID. Each symptom on the index corresponds to a score, with higher scores indicating stronger associations with Long COVID. Scores above a specific threshold suggest that the child is likely living with Long COVID.

These research findings could help healthcare providers and families by raising awareness about Long COVID, explained Dr. Gross. This research paves the way for researchers to further investigate why these differences in symptoms among different age groups occur, which could eventually support the development of age-specific Long COVID treatments for children.

In a panel discussion led by Dr. Salisbury (Virginia Commonwealth University), researchers spoke about the future of RECOVER pediatric research. Dr. Gross shared that researchers are following a large group of children for up to 4 years to learn more about how Long COVID symptoms change over time. Dr. Thaweethai added that RECOVER will also be conducting clinical and behavioral tests (e.g., learning assessments) to gain more insights into how children are experiencing Long COVID beyond the symptoms reported by their caregivers.

RECOVER Representatives Highlight Importance of Study Findings

Two RECOVER Representatives, Krista Coombs and Megan Carmilani, shared family perspectives on the impact of Long COVID in children and the importance of this latest research.

Krista Coombs, a mother of 2 children with Long COVID, became involved in caregiver and family support groups early in the pandemic. She joined RECOVER as a Representative to better advocate for her children and to stay informed about ongoing Long COVID research. She also works with members of the U.S. Congress on policies related to Long COVID and emphasized that being a RECOVER Representative has helped strengthen her voice and credibility in those efforts.

Megan Carmilani, a coauthor of the JAMA Pediatrics paper, is also the Founder and President of Long COVID Families. Her advocacy work is personal: as a child, she developed postural orthostatic tachycardia syndrome (POTS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following an infection with mononucleosis.

POTS is a condition that causes symptoms such as dizziness or fast heart rate during the transition from lying down to standing up, and ME/CFS results in severe fatigue that does not improve with rest and can worsen with physical or mental activity. Both conditions have also been associated with Long COVID. Ms. Carmilani saw many parallels between her experience and those of children with Long COVID—especially the lack of recognition and support.

Ms. Carmilani said that because of the lack of recognition around pediatric Long COVID, many families felt confused, isolated, and often dismissed. “It wasn’t until RECOVER started publishing that we started seeing a shift,” she shared. “We saw a significant shift as soon as the first paper came out. Even this last paper [on] early childhood, there’s been a significant shift in families’ ability to access support and care or even to be taken seriously.”

Both Ms. Coombs and Ms. Carmilani emphasized the need for increased awareness and early recognition of Long COVID in children. They urged families and pediatricians to take symptoms seriously and called for schools to offer appropriate accommodations, noting that Long COVID can be complex and often severely impacts a child’s daily life. This new research, they agreed, is a vital step forward in supporting families and building the path toward better care.

To find recordings and transcripts of more R3 seminars, visit the RECOVER YouTube channel and the R3 webpage.