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Understanding Pediatric Long Covid

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Individuals with Long
Covid is a child

What is Pediatric Long Covid?

Long Covid describes lasting effects from COVID-19 infection. It refers to ongoing, relapsing, or new symptoms, or other health problems that continue for at least three months after the initial illness. For the full consensus definition, see here

Some children may have symptoms that do not go away after their COVID infection. Some children may start to feel better and then start having new symptoms. Long Covid can happen to any child, even if they had mild or no symptoms during their COVID infection.

A negative COVID-19 test doesn’t rule out past infection in children. Studies show that kids are less likely to test positive on PCR tests than adults. The CDC reports that over 95% of children in the U.S. had COVID-19 antibodies indicating widespread infection.

Learn the Signs

School age children

The most predictive symptoms for Long Covid in school age children (5-11) are trouble with memory or focusing, back or neck pain, stomach pain, headache, fear about specific things (phobias), refusing to go to school, itchy skin or rash, trouble sleeping, nausea or vomiting, and feeling lightheaded or dizzy.

Adolescents

The most predictive symptoms for Long Covid in adolescents change or loss in smell or taste, body, muscle, or joint pain, daytime tiredness/sleepiness or low energy, tired after walking, back or neck pain.

Source: Characterizing Long COVID in Children and Adolescents, JAMA, 2024.

Post Exertional Malaise

Post Exertional malaise (PEM) is the cardinal symptom of Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, and is a symptom that has been reported in children with Long Covid. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM. Post Exertional malaise is a unique symptom, incongruent with experiences of fatigue after overexertion in healthy children. It is not the same as being more tired than normal after an activity, or second day muscle soreness after an activity.

Understanding the Unique Challenges for Children

Long Covid, often an invisible illness, relies heavily on patients describing their symptoms for proper recognition. This can be challenging for children, who may find it difficult to recognize and describe their symptoms. It’s crucial to understand that children may display Long Covid symptoms differently than adults. Recognizing these differences ensures they receive the necessary care and attention.

Invisible Illness

Long Covid symptoms aren’t always visible, making patient descriptions vital.

Communication Challenges

Children may find it harder to explain their symptoms.

Different Symptom Presentation

Pediatric Long Covid symptoms can differ from those in adults.

Importance of Awareness

Recognizing these differences helps ensure proper care for affected children.

How Children Have Described Their Symptoms

By understanding these nuances, we can better support children with Long Covid and ensure they receive the care they need.

"My legs feel heavy," indicating fatigue.

"I don't want to go to school," describing post-exertional malaise.

"I don't want to get out of bed," describing fatigue.

"My head hurts," describing difficulty thinking.

"I can't breathe," describing tachycardia or a rapid heartbeat.

"I don't want to eat that. It's gross," indicating a partial loss of taste and smell.

"I can't do it," describing cognitive challenges with schoolwork.

"My throat hurts," actually indicating pain at the neck and back of the head, suggesting a migraine.

"It's hard to walk up stairs," indicating a struggle with POTS, a condition linked to Long Covid. See below for more info.

Associated Conditions

Long Covid can lead to a range of associated conditions, significantly impacting children and adolescent’s health and daily lives. Understanding these conditions is crucial for effective management and support. Below, we highlight common associated conditions and their indicators. Explore each section for detailed information.

PANS/PANDAS

Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) is a condition characterized by a sudden onset of obsessive compulsive symptoms and/or severe eating restrictions, along with other neuropsychiatric symptoms. PANS can be triggered by viral infections like COVID-19.
Learn More

Dysautonomia

Dysautonomia occurs when there is a disruption in the autonomic nervous system, which controls essential (automatic) functions like heart rate, blood pressure, and digestion. COVID-19 has the potential to worsen or initiate this condition, resulting in symptoms such as lightheadedness, loss of consciousness, and a rapid heartbeat.

Postural tachycardia syndrome (POTS) is a disorder of the autonomic nervous system that causes an abnormally fast heartbeat when standing up.
Learn More

Mast Cell Activation Syndrome (MCAS)

Mast Cell Activation Syndrome (MCAS) can develop in children or adults and is part of a spectrum of mast cell disorders. In MCAS, mast cell mediators are released too frequently or in response to normally harmless triggers, such as certain foods or environmental chemicals, leading to various symptoms affecting multiple body systems.
Learn More

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort (physical, cognitive, emotional, orthostatic stressors).
Learn More

Fibromyalgia

Fibromyalgia presents an intricate profile of widespread musculoskeletal pain, fatigue, and sensitivity in targeted regions. COVID-19 has the capacity to exacerbate symptoms of fibromyalgia or potentially instigate its onset, significantly influencing overall health and wellbeing.
Learn More

Childhood Autoimmune Diseases

COVID-19 has been linked to triggering new autoimmune diseases and exacerbating existing ones in children. This can result in the immune system mistakenly attacking the body’s tissues, leading to conditions such as juvenile arthritis, lupus, or diabetes.
Learn More

Hypermobility

Hypermobility, commonly associated with conditions such as EhlersDanlos Syndrome, refers to joints that have an increased range of motion beyond what is considered normal for that joint. Infections such as COVID-19 have the potential to trigger or exacerbate symptoms of hypermobility, leading to increased joint pain and instability.
Learn More

Reactivation of Latent Infections

COVID-19 has been discovered to awaken dormant infections in individuals, leading to a resurgence of symptoms from conditions such as EpsteinBarr virus (EBV),
cytomegalovirus (CMV), human herpesvirus 6 (HHV6), and Lyme disease. Reactivation of infections post-COVID can worsen symptoms, emphasizing the need for comprehensive care due to immune system changes.

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Interventions

Research is underway to better understand and identify treatments for Long Covid in children. In the meantime, lifestyle interventions are crucial for managing pediatric Long Covid, supporting recovery, and promoting wellbeing. Consult your healthcare provider for medical advice. This is for educational purposes only.

Key Lifestyle Recommendations

Healthy Diet: Ensuring a balanced diet is essential and may vary based on each child’s unique requirements. Following infection, some children may develop new food allergies, while others may need to adjust their eating habits due to changes in taste or smell.
Physical Activity: Monitor symptoms closely and adjust activity levels for children with Long Covid when needed, especially those with post exertional malaise (PEM), where symptoms worsen after physical or mental exertion. Balancing activity and rest is crucial. See our Pacing Guide for more information.
Quality Sleep: Establishing a consistent sleep routine and bedtime habits is crucial for promoting restorative sleep. However, disrupted sleep is common in pediatric Long Covid, and consulting a doctor is important if sleep disturbances persist.
Stress Management: Managing stress is crucial as it can worsen symptoms. Introduce deep breathing or mindfulness techniques. Encourage relaxation activities like soothing music, warm baths, or connect with nature. Families find binaural beats particularly soothing. Note that preferences and needs vary, so not all techniques suit every child.
Hydration: Making sure your child stays well hydrated is essential for supporting their overall bodily functions. Electrolytes can be beneficial for many in maintaining hydration levels.
Screen Time: Reducing screen time is helpful for children dealing with Long Covid, as excessive screen exposure can exacerbate fatigue, strain the eyes, and disrupt sleep patterns, impeding their recovery and overall well-being. Some children have found relief in specialized glasses tailored for migraine sufferers, which feature tinted lenses to filter out blue light. This can potentially alleviate eye strain and light sensitivity frequently experienced by children with Long Covid.
Compression Gear: Some children with Long Covid find support from compression gear, especially those who experience dizziness. Compression socks or waistbands can provide gentle pressure that may help alleviate symptoms and improve comfort. If your child experiences dizziness or related symptoms, consider discussing the potential benefits of compression gear with their healthcare provider to see if it might be suitable for them.
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