PANS/PANDAS STORIES

Lucy McDonald
  • 5.0 (22)
  • Mental Health
  • Updated weekly

Welcome to PANS/PANDAS Stories. Join Lucy McDonald as she talks to children and parents living with this misunderstood neuropsychiatric condition and to the experts dedicated to understanding and treating it. Awareness is growing, and this podcast hopes to grow it further. Real stories, honest conversations, and hope for anyone finding their way along the long and complicated road to recovery. Some episodes contain themes listeners may find upsetting. This podcast does not replace medical advice.

  1. 3 days ago

    OCD Special: I-CBT - Suicidal Intrusive Thoughts with Therapist Angela Henry

    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.

  2. 6 Jul

    The Day Our Children Changed Overnight: Two Mothers on PANS/PANDAS

    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

  3. 18 May

    IVIG, Rage, and how music heals. Dr Patrick Whelan shares insights PANS PANDAS

    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.

  4. 4 May

    Treating the Whole Child: PANS/PANDAS, Neuroinflammation & Hope with Dr. Leila Mason

    ((Before I talk about this episode, I have a favour! Please scroll down - there is a survey link below - 20 minutes of your time could shape the future of therapy for this illness 💛 Thanks)) This week Lucy is joined by Dr. Leila Masson, a paediatrician based in Sydney, Australia, who takes an integrative approach to treating PANS/PANDAS. Leila shares what it's like to practise in a landscape where colleagues still question whether the condition exists and why she's certain it does. We cover a huge amount of ground — from Leila's diagnostic and treatment approach, including the ibuprofen test and what a flare protocol looks like in practice, to the role of lifestyle factors like sleep, nutrition, the gut microbiome and even oral hygiene in managing and preventing flares. Leila also talks about recovery, treating teenagers, and why hope is one of the most important things she can offer families. Leila also shares details of her online courses for parents and caregivers, available at drleilamasson.com Please note this episode discusses OCD, anxiety, rages, self-harm and eating restrictions. **As you are here, can I ask a favour?** Calling the PANS/PANDAS community - 20 minutes of your time could shape the future of therapy for this illness 💛 We know children and families have different experiences with therapy for PANS/PANDAS. The MIND Global Council — a team of therapists, many with lived experience of the condition themselves — is researching what works, what doesn't, and why, alongside Chapman University in California. The findings will be used to build proper therapeutic guidelines. Good experiences, bad ones, in-between ones — we want to hear it all. The more honest the responses, the better the guidelines will be for everyone who comes after us. Please take the survey here PARENT SURVEYhttps://chapmanu.co1.qualtrics.com/jfe/form/SV_6W4T1lQW5qeda3YCLINICIAN SURVEYhttps://chapmanu.co1.qualtrics.com/jfe/form/SV_eVUFn6VjUP38OYS

    Treating the Whole Child: PANS/PANDAS, Neuroinflammation & Hope with Dr. Leila Mason

  5. 12 Apr

    Evie Meg talks about PANS/PANDAS, encephalitis, dystonia, OCD, Bartonella and Lyme Disease

    Evie Meg is the most well known advocate for immune mediated neuropsychiatric disorders with more than 15 million followers on TikTok (which I worked out is twice as many as Coldplay, people!) and 1m on Instagram. As a child, she was prone to infections - chicken pox and shingles twice, burst eardrums - but healthy enough to thrive as a competitive gymnast.  Aged 14, she developed crippling social anxiety and depression, and that was just the start of it. Tics, Tourettes and OCD followed, and after many years and many doctors, she received a Functional Neurological Disorder diagnosis, and was told her mental health was causing physical problems.  It took a stranger on Instagram in 2020 to point her towards PANS/PANDAS - and with it, the understanding that she needed treatment for the encephalitis driven by immune-mediated inflammation. Recovery began there, and is still ongoing. She talks about how talking therapy has been helpful for her, losing time and adapting to the life you have, Here, she talks candidly about treatment, life with chronic illness, the particular difficulty of dystonia, glimpses of getting better, and where she finds her joy

  6. 18 Mar

    OCD, PANS & Dr Zoe Gillispie: What Parents and Therapists Need to Know

    Dr Zoe Gillispie is one of the world's leading neuroimmune-psychiatric psychologists, working with children and families with PANS/PANDAS from her Californian practice. Here she shares insights and expertise about the illness with Lucy McDonald, including why parents are blamed, why experts mistakenly look at psychosocial factors, not biology, and how early treatment is key, I collaborate with Zoe as part of the Mind Global Council - an international group of psychotherapists and psychologists with lived experience, working to transform mental health care for individuals and families affected by complex immune-inflammatory conditions. Hope you enjoy it, Lucy

  7. 28 Feb

    Why Children With PANS Struggle With Everyday Life | Occupational Therapy Explained

    Michelle Newby thinks that Occupational Therapy should be the fourth pillar of PANS/PANDAS treatment, after controlling inflammation and infection and psychiatric and psychological help. She works closely with PANS/PANDAS children in Australia and explains how OT can be life-changing, helping a child’s body, brain, and environment work together better. Allowing them to manage or return to school, but also with other problems such as eating and sleeping. Her work feels a little like a detective, and her success lies in being curious about exactly how a child's difficulties are holding them back and then coming up with solutions. Her work is gentle and practical and this podcast is well worth a lesson if you're new to OT or a bit of a PP veteran who wants support on helping your child live a fuller life.

  8. 20 Feb

    Living With PANS/PANDAS and Fighting Back | Kirk Lord’s Story

    "I want every single kid, every single teen, every single young adult, every single adult with PANS/PANDAS to realise what they are capable of because they are capable of so much more than their disorder gives them the notion of..." One of my favourite episodes ever. So pleased to talk to Kirk Lord on the podcast. He first got PANDAS aged 4 or 5, recovered only to get it again in his late teens. This has not deterred him from living his best life. He talks of a growth mindset and gaining grit and resilience from battling the illness, and how "if you think PP is limiting, think again" He set up the National PANS/PANDAS Youth Alliance to advocate for the illness and to unite young people who have experienced or are experiencing its impact. And he practises what he preaches - already a stellar athlete, he dreams of competing in the Olympics. Kind, articulate, and passionate, Kirk is a fantastic rolemodel for what surviving or living with PANS/PANDAS looks like.

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5
out of 5
22 Ratings

About

Welcome to PANS/PANDAS Stories. Join Lucy McDonald as she talks to children and parents living with this misunderstood neuropsychiatric condition and to the experts dedicated to understanding and treating it. Awareness is growing, and this podcast hopes to grow it further. Real stories, honest conversations, and hope for anyone finding their way along the long and complicated road to recovery. Some episodes contain themes listeners may find upsetting. This podcast does not replace medical advice.

Information

  • Creator
    Lucy McDonald
  • Years Active
    2023 - 2026
  • Episodes
    26
  • Rating
    Explicit
  • Copyright
    © Lucy McDonald
  • Show Website
    PANS/PANDAS STORIES

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