PANS/PANDAS STORIES

** NOTE - IN THIS EPISODE I say that inference-based CBT is not evidence-based. This is wrong. I meant it is not evidence-based in children yet (although that work is underway) but it is evidence-informed in children. It is approved by the IOCDF for adult populations and is a rigorous treatment that I like as an alternative to ERP**

Meet the brilliant Barb Shephard who advocates passionately for PANS in New York.
She is an empathic therapist with a deep understanding of OCD. Here she talks about Exposure and Response Prevention for OCD, working with PANS, and how her own experiences have shaped her as a therapist.
She says: "I often meet parents and they say, we don't see them doing any rituals. Their room is untidy...It's such a dangerous idea that we have of what OCD is. When you work with OCD and you see the mental compulsions and the emotional toll that that can take on people who have no idea that it's OCD."
She is also on the team with me at MIND Global Council - an international coalition of therapists working to improve psychotherapy outcomes in PP.
PS If you live near Niagra, and visit on PP Day - you will see it lit up green - that is Barb's work!

Barb is a remarkable therapist, who only realised she had OCD when she became a therapist herself. It was listening to the PANS/PANDAS Stories podcast that shed light on loved one's complex situations. Barb is a remarkabale advocate for PANS/PANDAS and a warm and humane therapist. NY is lucky to have her!

OCD and PANS PANDAS specialist Angela Henry talks about treating OCD using I-CBT. This is a different approach that focuses on doubt – particularly how OCD can make us distrust what we know through our senses and experience.
Rather than starting with “How do I tolerate the anxiety this thought creates?”, I-CBT looks at an earlier step: “How did I come to doubt this in the first place?”
It helps people recognise when OCD is pulling them away from what’s actually happening in the here and now and into imagined possibilities - the endless “what ifs” that can make something feel possible even when there’s no real evidence for it.
She talks about suicidal OCD. This specific subtype involves unwanted and distressing intrusive thoughts or fears about self-harm, rather than a genuine desire to hurt oneself.
Professional help is needed to understand what is happening and ensure the child or young person gets the right treatment. It can be so alarming for parents when their child experiences intrusive thoughts like this. Angela explains them as egodystonic – which means they are against a person's values or wishes. A key marker of OCD thoughts. She is so kind, clear and reassuring. A must-listen.

Angela talks about I-CBT, an emerging treatment for OCD which works by targeting reasoning and distinguishing reality.
I was fascinated to learn more, particularly as it is a good evidence-informed alternative to ERP, which does not always work for neuroimmune children.
Anyway, enough of me. Link in the bio!
If you or your child is experiencing any of these symptoms, please seek medical advice.

A whopping episode-in more ways than one. In this podcast I speak to PANS/PANDAS parent and advocate Lindsey Forsyth and her friend and fellow PANS/PANDAS mother, Kate Rooney. Longer than normal, as there was so much to talk about, and it was also my first-ever triple-header. Coming from London, Florida, and California.
The pair speak passionately and candidly about navigating the system and trying to work out what good care looks like. They talk about sudden onset, IVIG, OCD, the importance of community, and how their faith has helped them.
There is a lot of information in this podcast. Many US doctors are mentioned by name (all positively), and different treatments and medications are discussed.
This is not medical or therapeutic advice. Please see a healthcare professional to discuss your child.
**Also, while you are here, my PANS PANDAS online therapy course is now available. Three hours of easy-to-watch short films covering how to look after yourself so you can look after your child; the main symptoms and therapies; flares and what recovery may look like for you. Lots of resources and peer-reviewed. Early bird price of £99.**
Link here: lucy-mcdonald-s-school.teachable.com/purchase?product_id=6744859

Dr Whelan is a rheumatologist from UCLA in California. He describes his discipline as almost the last port of call for many suffering from PANS/PANDAS but describes how his specialist understanding of inflammation broadens the lens of investigation and often provides answers.
In this fascinating chat, he talks about immunological mechanisms and immune deficiency, IVIG treatment, the microbiome's link to psychiatric symptoms, OCD therapy that changes brain blood flow and how music therapy can activate and regulate brain pathways. A truly fascinating chat. I hope he'll come back on, as I feel we only touched the surface.