Post COVID Long Haulers Syndrome vs. PANS/PANDAS

Some who experience a COVID viral infection can also experience physical, neurological, and psychological symptoms long after the initial infection. For those who experience new or worsening pre-existing neurocognitive or neuropsychiatric issues, the road to proper help can be especially difficult. 

Long haulers and PANS/PANDAS result from an infection that can leave lingering neurocognitive or neuropsychiatric issues. The question is, are they the same? 

Extended post-viral symptoms aren't anything new. Research has documented post-viral symptoms after Herpes 6 and Ebola (Proal & VanElzakker, 2021).  

PANS and PANDAS are pediatric autoimmune neuropsychiatric disorders that are distinct conditions that result from different infectious sources but produce similar neuropsychiatric and neurocognitive issues. It is important to recognize that PANS can result from any infection, including the coronavirus infection. 

What is PANS/PANDAS?

PANS and PANDAS are clinical diagnoses given to children who have a dramatic onset of a neuropsychiatric symptom or a sudden significant worsening of a pre-existing mental health or neurocognitive condition. 

The onset of neuropsychiatric or neurocognitive symptoms can appear overnight, or a variety of “soft signs” may appear to wax and wane before the dramatic onset or sudden acceleration of a clinical issue or condition. 

For example, with a worsening of symptoms after an infection, a child may have anxiety but is very functional in their daily life. But after getting a tick-borne infection, they develop anxiety at such a heightened level that they now have school refusal.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections or PANDAS is a clinical disorder triggered by Group A strep infections that results in a sudden onset of neuropsychiatric behaviors and either obsessive-compulsive disorder (OCD) or tics.

Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is a clinical disorder that results in the sudden onset of OCD symptoms such as intrusive thoughts, compulsive thinking or behaviors, ritualistic behaviors or disordered eating after an infection, multiple infections or toxic triggers to the immune system that results in inflammation. Any infection or toxin can trigger PANS, including the COVID-19 virus. Even an asymptotic case of COVID can trigger PANS.

PANS and PANDAS aren’t rare conditions but are rarely diagnosed, even when parents come in asking if their child has it. 

What is Post-COVID Long Haulers Syndrome?

Post-COVID-19 conditions, commonly known as long haulers or long COVID, can affect anyone exposed to SARS-CoV-2, regardless of age or severity of original symptoms. Even someone with a normal immune system who has experienced a mild case of COVID can have an extended period of symptoms. 

Studies show that around 10–20% of people infected by the COVID virus may go on to develop symptoms that can be diagnosed as long COVID (WHO, 2022). Another study of COVID-19 patients who were followed for up to 9 months after illness found that approximately 30% reported persistent symptoms (Logue et al., 2021).

Long COVID or long haulers is defined as the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation (WHO, 2022). 

Common symptoms of long COVID can include chronic fatigue, shortness of breath and brain fog, or cognitive or memory dysfunction. Chronic fatigue syndrome can be experienced by adults and children with long haulers. 

Many report exhaustion and problems with attention and thinking. There are over 200 different symptoms, including psychiatric and cognitive, that can have an impact on everyday functioning. Clinical issues such as depression and anxiety can result. 

It is important to note that multisystem inflammatory syndrome in children (MIS-C) is different from long COVID. The Centers for Disease Control and Prevention define MIS-C as a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. 

How has the Pandemic Affected Children with PANS/PANDAS?

Research has found that the pandemic has negatively impacted the symptoms of PANS/PANDAS for diagnosed children and impacted family relationships as well (Guido et al., 2021; O’Dor et. al, 2022). Moreover, the caregivers of children with PANS and PANDAS felt that associated symptoms were negatively impacted by the pandemic.

PANS/PANDAS in and of itself is a challenge, and the addition of isolation, disruption in education, and the COVID infection have all contributed to an increase in symptoms and family distress. 

Results from these studies (Guido et al., 2021; O’Dor et al., 2022) found that during the pandemic, children with PANS/PANDAS experienced the following:

• An increase in negative symptoms
• A negative impact on their child’s relationships with friends, extended family, participation in hobbies, and academic skills
• A worsening of symptoms after COVID infection

The caregivers experienced: 

• Relationship dissatisfaction
• Burnout
• Symptoms of stress 
• Symptoms of depression

One positive was that caregivers reported an increased positive relationship with their children during the pandemic (O’Dor et al., 2022) 

Self-care and avoiding burnout are important for parents and children. High levels of caregiver burden and stress are associated with worse outcomes for children with neurodevelopmental and medical disorders. 

Symptoms Associated with Long Haulers and PANS/PANDAS 

Adding to the confusion between these conditions is that many symptoms appear with long COVID and PANS/PANDAS. Symptoms of these conditions overlap due to the inflammation impact on the brain. Having asymptomatic COVID or a mild case also makes the connection to the infection and later PANS complex. 

With such misinformation out there about PANS/PANDAS and so few trained providers, getting the proper help to address psychiatric and neurocognitive is even more challenging. Research has found that access to care is problematic for children and teens with PANS and PANDAS, with the reported lag between the onset of symptoms and age at diagnosis ranging from 0.8 to 4.7 years (O’Dor et al., 2022).

Psychiatric and Neurocognitive Symptoms seen in both Long COVID and PANS/PANDAS 

• OCD
• Separation anxiety
• Mood changes
• POTS
• Brain fog
• Attention problems
• Dysregulated nervous system 
• Chest pain or panic attacks
• Heart palpitations
• Shortness of breath 
• Gastrointestinal disturbance 
• Sleep issues
• Fatigue 
• Sensory abnormalities

What is the Biology of Long COVID and PANS/PANDAS?

PANS/PANDAS results from a misdirected immune response where the immune system attacks itself, and this produces neuroinflammation. Instead of attacking infections or toxins, the immune system targets a region in the brain called the basal ganglia by mistake. This inflammation then results in neurocognitive and neuropsychiatric symptoms, including OCD, tics, rage, food restriction, anxiety, mood lability, rage, anger, focus issues, etc. 

With long COVID, they believe there are multiple reasons it occurs. COVID-19 patients with long haulers appear to have elevated levels of a cytokine called interleukin-6, suggesting they may be suffering from a state of chronic inflammation. Persistent, low-level grade of inflammation has been present in some research subjects (Jarrott et al., 2022). Decreased mitochondrial function is also suspected (Nunn et al., 2022). 

Brain inflammation is a shared cause of both Long COVID and PANS/PANDAS. As noted previously, COVID can trigger PANS, so we need to educate others about the connection in order to get proper care. 

How to Help a Child with Long COVID or PANS

Find a Qualified Expert Provider

You need an expert provider that can not only diagnose but create the right treatment plan. There are no specific lab tests for PANS/PANDAS or Long COVID used to diagnose, but there are lab tests that can be helpful for treatment. 

These are clinical diagnoses that are made after an interview and examination based on symptoms. Many untrained providers insist that certain markers in blood work must be present, but that isn’t the case.

Calm the Brain

Psychoimmunology shows us that no healing can occur with a stress-activated nervous system, so calming the brain is imperative. You can have the best physical care, but if the nervous system is in a “rev state,” the body’s resources won't be available for self-healing. 

In our BrainBehaviorReset™ Program, we use a variety of tools that calm the brain, including neurofeedback and PEMF. We even have our own PEMF device, CALM PEMF™, specifically designed to support mental wellness. 

Eat Clean 

Making sure to eat a nutrient-dense and anti-inflammatory diet will go a long way in supporting the healing and detoxification process. A healthy diet also reduces inflammation, which aids in symptom reduction. This is the best diet for PANS/PANDAS or any condition that results from inflammation. 

Prioritize Mental and Physical Wellness 

When your child is struggling with behavior and mental health, sometimes we make the mistake of prioritizing school over mental health care. Slowing down and investing resources and time in the root causes and addressing emotions. 

Without a focus on recovery, anxiety, depression, and other clinical issues can worsen issues. Parent coaching, cognitive behavioral therapy, and exposure and response prevention (ERP) are therapies that can be helpful and don’t carry any side effects that psychiatric medications have.

Citations:

Calaprice, D., Tona, J., Parker-Athill, E. C., & Murphy, T. K. (2017). A Survey of Pediatric Acute-Onset Neuropsychiatric Syndrome Characteristics and Course. Journal of child and adolescent psychopharmacology, 27(7), 607–618. https://doi.org/10.1089/cap.2016.0105

Guido, C. A., Loffredo, L., Zicari, A. M., Pavone, P., Savasta, S., Gagliano, A., Brindisi, G., Galardini, G., Bertolini, A., & Spalice, A. (2021). The Impact of the COVID-19 Epidemic During the Lockdown on Children With the Pediatric Acute-Onset Neuropsychiatric Syndrome (PANDAS/PANS): The Importance of Environmental Factors on Clinical Conditions. Frontiers in neurology, 12, 702356. https://doi.org/10.3389/fneur.2021.702356

Jarrott, B., Head, R., Pringle, K. G., Lumbers, E. R., & Martin, J. H. (2022). “LONG COVID”-A hypothesis for understanding the biological basis and pharmacological treatment strategy. Pharmacology research & perspectives, 10(1), e00911. https://doi.org/10.1002/prp2.911

Logue, J. K., Franko, N. M., McCulloch, D. J., McConald, D., Magedson, A., Wolf, C. R., et al. (2021). Sequelae in adults at 6 months after COVID-19 Infection. JAMA Netw. Open 4:210830.

Mirfazeli, F. S., Sarabi-Jamab, A., Jahanbakhshi, A., Kordi, A., Javadnia, P., Shariat, S. V., Aloosh, O., Almasi-Dooghaee, M., & Faiz, S. H. R. (2020). Neuropsychiatric manifestations of COVID-19 can be clustered in three distinct symptom categories. Scientific reports, 10(1), 20957. https://doi.org/10.1038/s41598-020-78050-6

Nunn, A. V. W., Guy, G. W., Brysch, W., & Bell, J. D. (2022). Understanding Long COVID; Mitochondrial Health and Adaptation-Old Pathways, New Problems. Biomedicines, 10(12), 3113. https://doi.org/10.3390/biomedicines10123113

O'Dor, S. L., Zagaroli, J. S., Belisle, R. M., Hamel, M. A., Downer, O. M., Homayoun, S., & Williams, K. A. (2022). The COVID-19 pandemic and children with PANS/PANDAS: an evaluation of symptom severity, telehealth, and vaccination hesitancy. Child psychiatry and human development, 1–9. Advance online publication. https://doi.org/10.1007/s10578-022-01401-z

Proal, A. D., & VanElzakker, M. B. (2021). Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms. Frontiers in microbiology, 12, 698169. https://doi.org/10.3389/fmicb.2021.698169

World Health Organization (Dec. 7, 2022). Post COVID-19 condition (Long COVID). https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition