Dr. Melanie Hoppers never intended to become an expert in post-viral illness. As a physician trained in both internal medicine and pediatrics, she had spent years in primary and urgent care before her own daughter developed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following a bout of mononucleosis. Frustrated by the lack of medical knowledge and treatment options, she immersed herself in the science of post-viral illness and ultimately joined the Bateman-Horne Center, a medical institution focused on treatment of complex illness like ME/CFS, fibromyalgia, and long COVID. I’ve had the honor of collaborating with Bateman-Horne – check out my Project ECHO presentation – and I keep meeting remarkable medical professionals who are dedicated to finding answers for complex disease.
I am so pleased to share my recent conversation with Dr. Hoppers on the latest episode of Long Covid, MD podcast. Dr Hoppers shares essential insights for parents navigating long COVID in children, based on her professional experience caring for these kids, and on her personal experience as a mother of an ill child. From recognizing symptoms to advocating for school accommodations, her advice is both practical and deeply personal. Below are some of the key takeaways from our discussion. Listen to the full episode here on Substack or on your favorite podcast app.Subscribe
Recognizing Long COVID in Children
The first challenge parents face is identifying long COVID in their child. Unlike adults, children may not always express their symptoms clearly. Dr. Hoppers emphasized that symptoms can appear weeks or even months after a mild or asymptomatic COVID infection, making it easy to miss the connection. Key signs include:
- Persistent fatigue, especially after exertion (physical, cognitive, or social activities)
- Frequent headaches and neurological symptoms, including brain fog and difficulty concentrating
- Sleep disturbances (insomnia, unrefreshing sleep, or excessive sleep)
- Gastrointestinal symptoms like nausea, vomiting, and food sensitivities
- Unusual sensory sensitivity, anxiety, or appearing constantly “on edge”
- Orthostatic intolerance (dizziness or lightheadedness when standing)
Dr. Hoppers described how many children with long COVID seem like they are “on fire from the inside out”—hypervigilant, easily startled, and struggling with dysregulated nervous systems.
The Importance of Pacing
The most crucial intervention parents can implement without a doctor’s prescription is pacing—helping their child stay within their limited energy envelope to prevent post-exertional malaise (PEM).
- Signs of PEM: If your child crashes after school, spends weekends recovering, or has worsening symptoms after activity, they are exceeding their energy limits.
- Preventing PEM: Encourage breaks, modify school schedules, and limit physically or cognitively intense activities before symptoms spiral.
- PEM is not laziness: Children with long COVID want to do things; their bodies simply won’t allow them to without consequences.
Dr. Hoppers acknowledged how difficult it is for parents to balance normal childhood experiences with the need for strict energy management. She advised erring on the side of caution: “Let them rest now so they have a chance to recover later.”
Advocating for School Accommodations
Since most pediatricians are still unfamiliar with long COVID and ME/CFS, parents must often lead the advocacy efforts. School accommodations are critical and may include:
- Reduced workload or modified schedules (shortened school days, remote learning options)
- Access to a rest area during the school day
- Permission to use a wheelchair or leave class early to avoid hallway congestion
- Extra time for assignments and tests due to cognitive fatigue
Pediatricians can play a vital role by supporting parents in these efforts. “We need more primary care doctors willing to step up,” Dr. Hoppers emphasized. The Bateman Horne Center offers educational resources to help both providers and families navigate these requests.
Addressing Common Medical Challenges
Although there is no single cure for long COVID, Dr. Hoppers outlined some of the most effective treatment approaches:
- Managing orthostatic intolerance: Increased salt and fluid intake, compression garments, and in some cases, medications like beta blockers can help regulate blood flow and reduce dizziness.
- Supporting the nervous system: Simple techniques like deep breathing, relaxation exercises, and structured downtime can help calm an overactive autonomic system.
- Dietary adjustments: Some children benefit from a low-histamine diet, avoiding processed foods and preservatives, especially if they have mast cell activation symptoms like rashes or nausea.
- Sleep strategies: Limiting screens before bed, maintaining a consistent schedule, and in some cases, using supplements or medications as guided by a physician.
Finding Support and Hope
Perhaps the most important message Dr. Hoppers conveyed is that children can improve. “I see kids get better more often than adults,” she noted, reinforcing that early intervention and proper pacing can make a difference.
She also encouraged parents to find community support—whether through local groups, online forums, or simply connecting with other families. “We lift each other up,” she said.
At the end of our conversation, she shared a piece of wisdom from her daughter: “Mom, I’m so lucky—I can still do this, and this, and this.” Despite the immense challenges of parenting a child with long COVID, she urges parents to hold onto moments of joy, however small.
Resources for Parents
For further guidance, Dr. Hoppers recommends:
- Bateman Horne Center: www.batemanhornecenter.org – Offers educational resources for parents and providers
- Dr. Peter Rowe’s Work on Orthostatic Intolerance: A leading expert in pediatric ME/CFS and dysautonomia. Dr Rowe now mentors the amazing Dr Alba Azola at Johns Hopkins. Dr Azola joined me on the podcast recently – listen to our conversation to learn more about dysautonomia.
- Long COVID advocacy groups: Many organizations offer webinars, toolkits, and community support
Parenting a child with long COVID is an exhausting and often lonely journey, but as Dr. Hoppers reminds us, we are not actually alone and there are treatment options. My heart goes out to the parents of ill children and I wish you comfort, resilience and at least some moments of joy.
Are you the parent of a long COVID kid? What has worked for your child and what hasn’t?