What Do PANDAS Families Need To Know About COVID-19?
With all the unknowns, it can be difficult for PANDAS families to navigate this complex combination of diseases.
As the COVID-19 pandemic continues to affect our daily lives, conflicting information from different sources has become common. It has become increasingly difficult to tell which guidelines the average person should follow, let alone what people with PANDAS should be doing.
Another big question is how coronavirus and PANDAS/PANS interact. PANDAS families have new concerns and questions each day. For example, do those who contract COVID-19 with PANDAS face an increased risk of severe illness? Are those with PANDAS disease at a greater risk of side effects from the vaccine?
A survey of 670 PANDAS families was recently conducted by the PANDAS Network to give more insight into how families have been affected throughout the pandemic. Moreover, they explain how families have been handling their children’s lives. Also, they provide tips for managing PANDAS disease during COVID-19.
This summer, PANDAS Network gathered self-reported data from families to assess the effects of COVID-19 on children diagnosed with PANDAS and PANS. They found that the majority of children and youth are doing well mentally and physically, despite a loss of connectivity.1 The majority of respondents were formally diagnosed with PANDAS or PANS, were 18 and younger and spent their free time indoors during the pandemic.
The majority of respondents were not diagnosed with COVID-19 and did not have any related symptoms. Of those who experienced COVID-19 symptoms, regardless of COVID-19 diagnosis, they noted common coronavirus symptoms. These include headache, sore throat, fever, muscle or body aches, chills and loss of taste or smell.
Families may have concerns about the side effects of the COVID-19 vaccine. More than 45% of surveyed individuals that they do not intend to vaccinate their child due to worries about safety. The majority of children and youth in PANDAS Network’s survey had not been vaccinated. But the 24% who stated that their child or youth had been vaccinated reported common vaccination side effects. These include pain at the injection site, fatigue and headache. Out of the vaccinated individuals in the survey, the majority noted no increase in PANDAS/PANS symptoms within 1–5 days after their first dose. Only 1% experienced an uptick in difficult symptoms related to PANDAS/PANS following their second vaccination.
Vaccination can help prevent severe illness from COVID-19 in healthy adults. But it is not approved for all children at this time. If you or your child with PANDAS/PANS are otherwise eligible for the COVID-19 vaccine and are unsure if it is a good choice, the best course of action is to discuss the risks and benefits with your medical provider. Your provider knows you, your child and your child’s health history best. They can give you the most accurate assessment and recommendation for your unique case.
As any virus can trigger a symptom flare in children with PANDAS or PANS, so can COVID-19.
Another concern is that some children have tics that cause behaviors such as licking their fingers, touching their face and rubbing their eyes,2 increasing the risk of contracting COVID-19 with PANDAS. Make sure that your child keeps their hands clean to minimize this risk. Also, children with OCD symptoms or contamination fears may experience anxiety as a result of hand washing, wiping down objects and going outside.
Social distancing is important for everyone who is unvaccinated. If your child is too young for vaccination, or you’re choosing not to vaccinate your child, social distancing is one method to help avoid contracting COVID-19. However, extended social isolation can contribute to poor mental health and impact learning. It can also affect interaction with others, which is essential for wellbeing.
One-third of parents surveyed by PANDAS Network felt that remote learning negatively impacted their child’s academic performance. We know that many children learn better in a classroom setting and many kids want to go back to school. But the push to return to school has come up against the more contagious Delta variant. Parents questioning their child’s return to school should discuss this with their child’s physician to help determine what is best.
It is unlikely that children with PANDAS or PANS have a higher risk than other children of contracting COVID-19. For more guidance on this topic, PANDAS Network asked Dr. Kenneth Bock with Bock Integrative Medicine in Red Hook, New York, for his perspective on what families should know in regard to PANDAS/PANS and COVID-19.
Dr. Bock says, “Clearly [PANDAS/PANS children] have underlying health conditions and immune dysregulation and inflammation, so we have to put them as having underlying health conditions…The good news is that children with the Coronavirus seem to get more mild illness, as a general rule, which is comforting, and I don’t think anyone knows exactly why. I think anytime you have immune dysfunction, it puts them in a different category. It’s not a reason to be scared, but parents just need to be more aware.”
Bock adds that while children with PANDAS or PANS do have immune dysregulation, they do not have the same risk level as an immunocompromised child, stating that “PANDAS/PANS kids don’t fall AT ALL in that sphere [of being immunocompromised].” However, children are more at risk in general with the Delta variant3, so following all safety and health guidelines is paramount for preventing children from contracting COVID-19.
Doctors previously thought that taking ibuprofen while sick with COVID-19 could lead to complications. But further research shows no such link. For children with PANDAS or PANS, controlling inflammatory responses is critical to reducing symptom severity during flares.4 Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen can be useful for children with PANDAS or PANS during flares.5 Always ask your provider about the risks and benefits of using medications.
In addition to managing PANDAS/PANS symptoms in the short term with NSAIDs, Dr. Bock says that supporting the immune system should remain a top priority in controlling symptom flares. He recommends taking high-quality probiotics to regulate immunity. Supplements such as vitamin D, zinc, high-quality omega-3 fish oil and vitamin A also help. He adds that “It is important to note that since vitamins A and D are fat soluble, if they are taken for prolonged periods of time, checking blood levels should be considered.”
To keep children with PANDAS healthy, it is crucial to support their immune systems. This means getting good sleep, eating a healthy diet, staying hydrated and avoiding inflammatory foods. Dr. Bock says that “COVID-19 provokes inflammation, so avoid sugar, and eat whole foods, lean protein and fruits and veggies.” Additionally, ensure that your child is cleaning their hands often with soap and water or an alcohol-based hand sanitizer and avoiding people who are sick.
Staying healthy, social distancing and washing your hands is important. But it’s critical to maintain good mental health as much as you can during COVID-19. In PANDAS Network’s survey, half of the families reported that their child had an increase in general anxiety. A third reported an increase in OCD symptoms, depression, difficulty sleeping and other mental health symptoms.
Methods that respondents suggested for supporting mental health during the pandemic included allowing more time for your child to relax with family and easing the rules for screen time or games. Additionally, they suggested providing creative outlets such as arts and crafts to distract your child, occupy their time and reduce stress. According to Dr. Bock, stress can be immunosuppressive, so mitigating stress as much as possible is a must. It may also help to talk to a therapist or cognitive behavioral therapy professional (even virtually) and connect with groups for extra PANDAS/PANS support.
If you’re looking for additional resources and community support, join the PANDAS Network support group as a family or treating professional member.
 PANDAS Network COVID-19 experience survey results. PANDAS Network. https://pandasnetwork.org/2018/10/coronavirus/. Accessed August 20, 2021.
 Berenbaum S. COVID-19’s daunting challenges for families with Lyme AND PANS/PANDAS. LymeDisease.org. https://www.lymedisease.org/covid-19-berenbaum/. Published March 30, 2020. Accessed August 20, 2021.
 Katella K. 5 things to know about the Delta Variant. Yale Medicine. https://www.yalemedicine.org/news/5-things-to-know-delta-variant-covid#:~:text=Unvaccinated%20people%20are%20at%20risk.&text=Kids%20and%20young%20people%20are,%2C%E2%80%9D%20says%20Dr.%20Yildirim. Published August 18, 2021. Accessed August 20, 2021.
 COVID-19 – advice For pans/pandas children. Brainstorm Health. https://www.brainstormhealth.co.uk/2020/03/covid-19-advice-pans-pandas-children/. Published August 10, 2020. Accessed August 20, 2021.
 PPN. Other treatment options. PPN. https://www.pandasppn.org/other-treatment-options/. Published April 4, 2021. Accessed August 20, 2021.