The parents of a child with PANS/PANDAS that I see in my Ridgefield, CT clinic are no strangers to the sudden and dramatic onset of behaviors that can make daily life challenging. These neuropsychiatric disorders, often triggered by infections like strep or from Lyme disease, cause severe behavioral, emotional, and cognitive issues. As a PANS mom myself, I know just how frightening and confusing these behaviors can be.
Understanding PANS and PANDAS is crucial in managing these episodes effectively, so one doesn’t personalize the behavior. For the parents in my one-to-one program or for those that get my Natural PANS/PANDAS Calm Brain Kit, it is important for parents to find a way to navigate these ups and downs due to a flare.
What are PANS and PANDAS Flares?
PANDAS flares are sudden and dramatic exacerbations of symptoms in children with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. These flares are typically triggered by infections, most commonly streptococcal infections, but can also be caused by other illnesses or immune triggers.
During a flare, children may experience a rapid onset or worsening of neuropsychiatric symptoms, which can significantly impact their behavior, emotions, and daily functioning.
PANS and PANDAS Flare Common Triggers
PANDAS flares are primarily triggered by infections that activate the immune system. The most common trigger is a streptococcal infection, such as strep throat or scarlet fever. However, other infections, including viral and bacterial infections, can also provoke a PANDAS flare.
- Infections: Group A Streptococcus, Lyme, tick-borne illnesses, COVID, Epstein-Barr, viruses, and so on can trigger a flare.
- Stressors: Changes in living situations, school-related stress, parent stress, or significant disruptions to routine.
- Other Infections: Flares may also be triggered by viral or bacterial infections that stimulate the immune system.
- Allergens: Dietary or environmental allergens can cause neuroinflammation
- Gut Health Issues: Medications, diet, stress, detoxification issues and more can impact how the gut is functioning.
- Neuroinflammation: Can result from a variety of toxins, infections, allergens, stressors, gut issues, and so on.
- Detoxification: Improper detoxification due to gut health issues, stress, genetic variants and more can lead to a chronic flare pattern.
Why Do PANS and PANDAS Flares Happen?
When the immune system responds to an infection, it produces antibodies to fight off the pathogens. In PANDAS, these antibodies mistakenly attack the basal ganglia in the brain, leading to the sudden onset or worsening of neuropsychiatric symptoms.
- Autoimmune Response: The body's immune response mistakenly targets the brain, leading to inflammation and a rapid onset of neuropsychiatric symptoms.
- Molecular Mimicry: This phenomenon occurs when the immune system confuses similar-looking molecules on microbes with the body’s tissues, targeting the brain and nervous system.
Common PANS and PANDAS Symptoms During a Flare
There can be a variety of symptoms during a flare but these are common.
- Abrupt onset of OCD-like behaviors
- Eating disorders (e.g., ARFID or anorexia)
- Severe anxiety
- Tics
- Mood swings and irritability
- Emotional and behavioral dysregulation
- Decline in academic performance
- Attention and learning difficulties
- Sensory sensitivities
Managing PANS and PANDAS Flares:
Responding effectively to flares, outbursts, or violent behaviors in children, especially those experiencing conditions like PANS/PANDAS, requires a blend of proactive strategies and reactive measures.
- Immediate Medical Intervention: Quick response with anti-inflammatory or immunomodulatory therapies.
- Herbs, Supplements and Homeopathy: These methods can provide both long-term and quick acting mental health support
- Supportive Therapies: Neurofeedback, PEMF, ERP Therapy, Cognitive Behavioral Therapy (CBT) and other supportive interventions.
- Education and Awareness: Ensuring caregivers and educational institutions understand the triggers and symptoms for better support.
One study by Frankovich et al. (2017) explains how to help kids with PANS/PANDAS, which are triggered by infections like strep throat. It talks about using antibiotics to treat and prevent these infections from returning. It also mentions using particular medicines to reduce inflammation and support the immune system. The goal is to manage symptoms and improve the child's health through medical treatments and supportive therapies.
Here are several methods that can help manage these challenging situations more effectively:
1. Share Your Calm
- Strategy: Maintain a calm demeanor by reminding yourself that your child isn’t doing this on purpose. Doing your own work to calm your nervous system is the only way to maintain your cool. Your calmness can help de-escalate the situation and serve as a model for your child on how to regulate emotions.
2. Nonverbal Reassurance
- Strategy: Use gentle, non-threatening body language. Make sure your posture is open and non-confrontational. Offer comfort through a calm presence without forcing physical contact, but give hugs if your child will allow it.
3. Validate Feelings
- Strategy: Acknowledge your child's feelings without judgment. Say things like, “I see you’re upset right now,” to let them know you understand their emotions.
4. Create a Safe Space
- Strategy: Have a designated ‘calm down' area in your home where your child can feel safe, relax, and get away from stressors. This space should be comforting and free of overwhelming stimuli.
5. Use Distraction Techniques
- Strategy: Divert your child’s attention from the trigger. This could be through suggesting a favorite activity, playing music they like, offering a sensory strategy, using humor or moving to a different environment.
6. Set Clear and Consistent Limits
- Strategy: Establish clear boundaries and enforce them consistently, calmly, and fairly. If possible, while you see early signs of a behavior episode about to happen, explain the offer advance behavior support beforehand and apply them predictably.
7. Develop a Signal or Code Word
- Strategy: Create a signal or word that means ‘I need space’ or ‘I’m feeling overwhelmed,’ which your child can use when they start feeling agitated, allowing them to express the need for help without escalating behavior.
8. Offer Choices
- Strategy: Giving limited choices helps a child feel a sense of control.
- For example:
- “Would you like to draw or read a book to feel better?”
- Using one, two, or three fingers, would you like number one space, number two a hug, or number three for me to just sit here with you?”
9. Practice Deep Breathing Together
- Strategy: Teach and practice deep breathing exercises with your child during calm moments so that they can use this tool during outbursts to help regain control. Trying to get your child to “breathe” when they are upset only works if you are regularly practicing it, so this isn’t a strategy to use if they are unfamiliar with it.
10. Use Short and Simple Commands
- Strategy: During high-stress moments, keep your language simple and directions clear to ensure your child can understand you despite being emotionally overwhelmed.
11. Seek Professional Help
- Strategy: If outbursts are frequent and intense, consider seeking help from a child psychologist or psychiatrist who can provide guidance and potential therapy to help manage the behaviors.
12. Monitor Triggers
- Strategy: Keep a log of outbursts to identify patterns or triggers that precede violent behaviors. Understanding these can help in developing strategies to avoid or modify these triggers.
13. Positive Reinforcement
- Strategy: Reinforce desirable behaviors with praise or rewards. Focus on what your child does right before, during, or after outbursts to encourage positive handling of emotions.
These strategies can help parents and caregivers manage challenging behaviors more effectively, ensuring that the child’s and the family’s needs are addressed sensitively and constructively.
Looking for more behavioral support for your PANS/PANDAS child or teen? That is exactly why I created The Natural Pans/Pandas Calm Brain Kit. It is a game-changing guide on how to empower your child and help them achieve a calm brain. It explains what PANS/PANDAS is, how it affects your child and shows you the path to addressing it.
What is the difference between PANDAS and PANS?
PANDAS and PANS are both pediatric neuropsychiatric disorders. PANDAS specifically involves symptoms triggered by streptococcal infections, while PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) encompasses a broader range of triggers, including infections other than streptococcus.
How is PANDAS disease diagnosed?
Diagnosis of PANDAS disease involves thoroughly evaluating symptoms, medical history, and sometimes laboratory tests to confirm the presence of streptococcal infection or markers of autoimmune response.
What supplements can help with OCD symptoms in PANDAS patients?
While supplements may vary depending on individual needs, some patients with PANDAS and OCD symptoms may benefit from supplements like magnesium, omega-3 fatty acids, vitamin D, and probiotics. However, consulting with a healthcare professional before starting any supplement regimen is essential.
What is the life expectancy for someone with PANS disease?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) does not typically affect life expectancy directly. However, the severity of symptoms and the effectiveness of treatment can significantly impact the quality of life and long-term outcomes for individuals with PANS.
Can PANDAS disease be diagnosed in adults?
While PANDAS disease is primarily identified in children, some adults may experience similar neuropsychiatric symptoms triggered by infections. Diagnosis in adults can be more challenging but is possible with careful evaluation by a qualified healthcare professional.
Is there a connection between streptococcus and PANDAS disease?
Yes, streptococcal infections, particularly Group A streptococcus (Streptococcus pyogenes), are believed to trigger PANDAS disease in susceptible individuals, leading to an abnormal immune response that affects the brain and causes neuropsychiatric symptoms.
Citation
Frankovich, J., Swedo, S., Murphy, T., Dale, R. C., Agalliu, D., Williams, K., Daines, M., Hornig, M., Chugani, H., Sanger, T., Muscal, E., Pasternack, M., Cooperstock, M., Gans, H., Zhang, Y., Cunningham, M., Bernstein, G., Bromberg, R., Willett, T., & Brown, K. (2017). Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies. Journal of Child and Adolescent Psychopharmacology, 27(7), 574–593. https://doi.org/10.1089/cap.2016.0148
Dr. Roseann is a mental health expert in PANS/PANDAS who frequently is in the media:
- Healthy Parenting Connector (Video) Why “My Kid is Acting Crazy” Might be PANS/PANDAS
- Living with Lyme (Podcast) Neurofeedback and biofeedback for PANS/PANDA
- Maria Rickert Hong (Audio) PANS/PANDAS
Always remember… “Calm Brain, Happy Family™”
Disclaimer: This article is not intended to give health advice and it is recommended to consult with a physician before beginning any new wellness regime. *The effectiveness of diagnosis and treatment vary by patient and condition. Dr. Roseann Capanna-Hodge, LLC does not guarantee certain results.
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Dr. Roseann is a Children’s Mental Health Expert and Licensed Therapist who has been featured in/on hundreds of media outlets including The Mel Robbins Show, CBS, NBC, PIX11 NYC, Today, FORBES, CNN, The New York Times, The Washington Post, Business Insider, Women’s Day, Healthline, CNET, Parade Magazine and PARENTS. FORBES called her, “A thought leader in children’s mental health.”
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Dr. Roseann Capanna-Hodge has three decades of experience in working with children, teens and their families with attention-deficit hyperactivity disorder (ADHD), autism, concussion, dyslexia and learning disability, anxiety, Obsessive Compulsive Disorder (OCD), depression and mood disorder, Lyme Disease, and PANS/PANDAS using science-backed natural mental health solutions such as supplements, magnesium, nutrition, QEEG Brain maps, neurofeedback, PEMF, psychotherapy and other non-medication approaches.
She is the author of three bestselling books, It’s Gonna Be OK!: Proven Ways to Improve Your Child's Mental Health, The Teletherapy Toolkit, and Brain Under Attack. Dr. Roseann is known for offering a message of hope through science-endorsed methods that promote a calm brain.
Her trademarked BrainBehaviorResetⓇ Program and It’s Gonna be OK!Ⓡ Podcast has been a cornerstone for thousands of parents facing mental health, behavioral or neurodevelopmental challenges.
She is the founder and director of The Global Institute of Children’s Mental Health, Neurotastic™Brain Formulas and Dr. Roseann Capanna-Hodge, LLC. Dr. Roseann is a Board Certified Neurofeedback (BCN) Practitioner, a Board Member of the Northeast Region Biofeedback Society (NRBS), Certified Integrative Mental Health Professional (CIMHP) and an Amen Clinic Certified Brain Health Coach. She is also a member of The International Lyme Disease and Associated Disease Society (ILADS), The American Psychological Association (APA), Anxiety and Depression Association of America (ADAA) National Association of School Psychologists (NASP), International OCD Foundation (IOCDF).
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