Podcast Summary: The OCD Whisperer Podcast with Kristina Orlova

Episode 156: PANS/PANDAS – The Autoimmune Cause of Sudden OCD in Children

Release Date: October 28, 2025
Host: Kristina Orlova
Guests: Angela Henry (private practice practitioner) & Lindsay Forsyth (parent and advocate)

Episode Overview

This episode sheds light on PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) as autoimmune causes of sudden-onset OCD in children. Host Kristina Orlova is joined by practitioner Angela Henry and parent-advocate Lindsay Forsyth for an expert and personal exploration of how these disorders appear, how to approach treatment, and how families can find hope and resources.

Key Discussion Points & Insights

1. Definitions & Key Distinctions

(01:27–03:53)

• PANS and PANDAS are both forms of autoimmune encephalitis, where the body’s immune system turns on itself, often after fighting off infection or due to environmental factors.
• PANS: Can be triggered by various infections (COVID, influenza), toxins (mold), environmental factors, or even some vaccines.
• PANDAS: Specifically triggered by group A strep (which can present as strep throat, impetigo, scarlet fever, or even anal strep).
• Both result in abrupt onset of neuropsychiatric symptoms, the most striking being sudden OCD and/or tics (PANDAS) or restrictive eating (PANS), among others.

“PANDAS is a sudden onset of OCD and/or tics and then two other symptoms. PANS is sudden onset OCD and/or restrictive eating and then more psychiatric symptoms.”
— Angela Henry, (03:26)

2. Identifying Sudden Behavioral Changes & Medical Pathway

(03:53–13:30)

• Lindsay describes her own family’s journey:
  • Her previously well-adjusted son began exhibiting extreme anxiety, rage, clinginess, bedwetting, and separation anxiety—seemingly overnight.
  • The family initially attributed it to normal child development, then sleep problems, and only stumbled upon PANS/PANDAS after speaking with another parent.
  • Diagnostic process: Immediate strep testing, a comprehensive viral/bacterial blood workup, and consultation with a PANS/PANDAS-knowledgeable neurologist.
  • Emphasizes that diagnosis is clinical (not just based on laboratory tests) and requires connecting sudden neuropsychiatric symptoms to an infectious or inflammatory trigger.

“It feels like you don’t even recognize who they are and not have answers for it. …it truly feels like your child is slipping away.”
— Lindsay Forsyth, (04:30)

“Once that mechanism has been turned on...any spike to the immune system can and often does create a flare for that child.”
— Lindsay Forsyth, (11:22)

Resources for Families:

• Directories to find specialized physicians:
  • PandasNetwork.org
  • Aspire
  • Neuroimmune Foundation
  • Pandas Physicians Network

3. Advocacy & The Importance of Parental Knowledge

(14:14–15:41)

• Families must often bring information and advocate for thorough investigation, as general pediatricians may not be familiar with PANS/PANDAS.
• Use reputable networks/resources to prepare for appointments; bring symptom checklists, family histories, and studies to facilitate diagnosis.

“We are lucky because another mom spoke up...Don’t be afraid to use those resources and have them available to go to your pediatrician no matter where you’re located.”
— Lindsay Forsyth, (14:14)

4. Therapeutic Approach: Support vs. Standard Therapy

(16:32–20:37)

• Schools and parents are on the front lines of noticing abrupt behavioral changes.
• PANS/PANDAS children are frequently misdiagnosed with behavioral disorders (e.g., oppositional defiant disorder) due to lack of clinician awareness.
• Standard behavioral approaches (rewards/punishments, rigid therapy) are unlikely to work—these children are “having a hard time, not giving you a hard time.”
• Critical to acknowledge brain inflammation as the underlying driver—therapy must account for the child’s current cognitive capacity.

“These kids aren’t giving you a hard time. They’re having a hard time because of a brain inflammation.”
— Angela Henry, (18:33)

“If the therapist is just doing straight therapy…you’re giving it to someone who’s just not able to access the gifts of it yet.”
— Angela Henry, (19:44)

5. Role of Therapy During Flares

(20:48–25:27)

• Medical treatment and inflammation reduction must be the initial focus.
• Therapist’s role while child is symptomatic: psychoeducation for family, emotional support, validation, support for siblings.
• Avoid pressure-based therapy during active inflammation—children may lack capacity for exposure/response prevention (ERP) and similar approaches.

“Sometimes we can’t put the fire out because it’s literally out of our control…it’s brain inflammation. But we can sit with our kiddo…”
— Angela Henry, (21:36)

• Lindsay underscores parental misunderstanding of OCD, especially covert/invisible compulsions (e.g., constant reassurance seeking, avoidance due to fear).

6. Common Symptoms and Diagnostic Clues

(25:27–30:56) Dr. Sweeto and Stanford Research presented notable findings:

• 98% show emotional lability
• 95% separation anxiety
• 90% handwriting changes (with possible dramatic shifts in form)
• 90% urinary changes (bedwetting, frequency, daytime accidents)
• Additional symptoms: ADHD-like behavior, sleep/eating disorders, sensory issues, memory blocks, academic and learning challenges
• High comorbidity with neurodiversity
• Underlying genetic factors/epigenetics may explain susceptibility—certain DNA mutations increase risk.

“There are three main areas of DNA mutations that PANS/PANDAS children often share…immunological and two are neurological in nature.”
— Lindsay Forsyth, (29:04)

7. Takeaways & Calls to Action

(30:56–32:24)

• Advocate for your child—ask thorough questions; seek referrals and specialized medical evaluation.
• Medical stabilization (reducing inflammation) precedes effective therapy.
• When pursuing therapy, lean toward compassionate, acceptance- and compassion-based models during or following medical treatment.

“Once you know it, then you can kind of take the next steps to address the medical component and address the inflammation piece first and then…see what comes up next.”
— Kristina Orlova, (31:08)

Notable Quotes & Memorable Moments

• Lindsay Forsyth’s Hopeful Testimony:
  “He’s almost back to baseline. He feels great, and if he never improved a day after today, we’d be very, very happy. He’s doing wonderfully.” (10:58)

• Parental Emotional Turmoil:
  “You feel like you’re making quarterback decisions and you’re not a quarterback.” (04:47)

• Metaphor for Therapy During Active Flares:
  “It’s like giving a child a present… but they are literally unable to open it because of the brain inflammation.” — Angela Henry, (19:17)

Timestamps for Important Segments

• [01:27] – What are PANS and PANDAS?
• [03:53] – Sudden behavioral changes: parental experience and early warning signs
• [11:22] – How flares can occur repeatedly after the immune system is triggered
• [14:14] – The role of advocacy; using specialized resources and checklists
• [16:32] – The role of therapy and the limits of traditional approaches
• [20:48] – Family support and psychoeducation during a flare
• [25:27] – Major symptoms and new research, including handwriting and urinary changes
• [29:04] – Genetic links and recent findings on predisposition
• [31:08] – Prioritizing medical stabilization before therapy

Where to Find the Guests

• Lindsay Forsyth:
  Email: l.forsyth@comcast.net (Grassroots, soon-to-launch nonprofit)
• Angela Henry:
  Website: AngelaHenryLCSW.com
  Social: The Center for Collaborative Healing (Instagram, Facebook)
  Consultation groups with Dr. Karen Lamb for professionals & families

Closing Thoughts

This episode is a must-listen for parents, educators, and professionals witnessing abrupt, unexplained neuropsychiatric changes in children. It provides hope, practical next steps, and validation—emphasizing the importance of combining medical and psychological approaches, understanding the limits of traditional therapy during active flares, and the critical need for family and professional support.