# Reevaluating “Do No Harm” for Kids with Long COVID: A Pediatrician’s Advocacy and Experience
The worldwide COVID-19 pandemic has profoundly affected countless individuals, yet the conversation surrounding one of its less recognized ramifications—long COVID in children—remains sparse. Extending well beyond the initial acute infection phase, long COVID encompasses a range of ongoing and frequently debilitating symptoms that can severely diminish quality of life. Pediatrician Elham Raker’s poignant narrative of her daughter’s struggle with long COVID highlights the shortcomings of the medical community’s response to this developing challenge.
Her experience illuminates the obstacles families encounter and underscores the necessity for transformation within pediatrics and other fields. By intertwining personal narratives with clinical knowledge, Raker advocates for a reimagining of the medical profession’s commitment to “do no harm”—a perspective that prioritizes proactive measures, creative solutions, and empathy in addressing long COVID.
## Comprehending Long COVID in Children
Long COVID, referred to as post-acute sequelae of SARS-CoV-2 infection (PASC), is defined by symptoms that endure beyond the expected recovery timeframe of COVID-19. These symptoms may range from fatigue, cognitive difficulties, headaches, ongoing respiratory problems, heart issues, abdominal pain, and numerous other physical and neurological concerns. For children, these ailments can disrupt critical developmental periods, hindering growth, education, and social interactions.
Estimates suggest that about 10-20% of children infected with COVID-19 may develop long COVID. As reinfections contribute to heightened risk, the prevalence of pediatric cases afflicted by long COVID continues to rise. Raker conveys that these children are not merely “improving with time”—many remain bedridden, unable to attend school, or partake in everyday life. This leads to a pressing inquiry: How can the healthcare system better support these children and their families?
## A Personal Account of Long COVID
Raker’s journey commenced three years ago when her daughter began displaying serious and unexplainable symptoms post-COVID-19 infection. Among these were persistent headaches, fatigue, and complications affecting various organ systems. It took six months to receive a diagnosis of long COVID, during which Raker confronted a disjointed healthcare landscape rife with gaps in knowledge and treatment opportunities.
Even within specialized long COVID clinics—intended to lead research and therapeutic advancements—Raker’s family frequently encountered validation without practical solutions. “There was nothing that any doctor offered,” Raker reflects, highlighting the overall scarcity of pediatric-specific treatment protocols. Nevertheless, as a pediatrician, Raker harnessed her medical knowledge and parental resolve to devise solutions, often drawing from online support communities and research insights.
## The Emotional and Systemic Burden
Families grappling with pediatric long COVID experience the weight of a healthcare system ill-equipped to address chronic, multi-systemic conditions in children. Parents often find themselves navigating fragmented care with various specialists—neurologists, pulmonologists, gastroenterologists, and cardiologists—to create a makeshift treatment plan. As Raker describes, it is not uncommon for wait times of over a year to see a pediatric pulmonologist or cardiologist in certain areas.
“How do you get these kids to these specialists, and then who is going to integrate the entire picture for them?” Raker inquires. This absence of a cohesive approach intensifies the stress for parents striving to advocate for their child’s comprehensive care while differentiating evidence-based treatment options from a daunting sea of possibilities.
## Long COVID Treatment: Assembling the Pieces
Raker explains that treatments for long COVID in children are as diverse as the symptoms presented. While a universal remedy is absent, several promising strategies can address significant challenges associated with the condition:
1. **Addressing POTS (Postural Orthostatic Tachycardia Syndrome)**: A frequent presentation in children experiencing long COVID is POTS, a disorder of the autonomic nervous system. Symptoms typically include dizziness, palpitations, and fainting upon standing. For Raker’s daughter and other patients, managing POTS necessitates collaboration with cardiologists and sometimes pharmaceuticals to stabilize blood pressure and heart rate.
2. **Low-Dose Naltrexone (LDN)**: This off-label medication, mainly utilized for opioid addiction at higher doses, has displayed anti-inflammatory effects at reduced doses. It has shown potential in alleviating symptoms for conditions characterized by immune system dysregulation, including long COVID.
3. **Focusing on Mast Cell Activation Syndrome (MCAS)**: Often linked to long COVID, MCAS is defined by excessive histamine release resulting in rashes, headaches, and fatigue. Treatments involving H1 and H2 blockers (e.g., Zyrtec and famotidine) were incorporated into Raker’s daughter’s treatment regimen.
4. **Supplements for Mitochondrial Nutrition**: Supplements like Coenzyme Q10, magnesium, vitamin D,