PANS/PANDAS STORIES

I had 10 minutes to speak about how to support parents at the PANS PANDAS UK Conference in October. In reality I could have spoken for hours on this subject. I think supporting parents is such a big part of the work so they can support their children, feel safe and navigate this complex illness. In this talk, I follow a fictional family through three stages: before, during and after diagnosis. I look at what parents actually need.I cover:Why parents are the frontline historians of their child’s illness, and why believing them is clinical informationThe “inversion,” where a parent’s response to illness becomes the explanation for it, and how this can escalate to FII allegationsLessons from medicine’s history of mother-blame“Holding the frame,” which means keeping biology, psychology and family circumstances in mind togetherWhy referrals need to be joined up, and how therapy, including ERP, needs adaptingBecause you can’t CBT your way out of inflammation! We need to work together, as while we debate diagnosis, a childhood is slipping away - for both child and parent.I am Lucy McDonald, a child and adolescent psychotherapist. I have a special interest in PANS PANDAS, and support families and children with the illness. I have an online course for parents sharing what I know. More information on lucy-mcdonald.com

** 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!PANS/PANDAS Stories was co-created by Jo Joyner and Lucy McDonald. It is hosted by Lucy, a child and adolescent psychotherapist with a special interest in PANS/PANDAS. She sees children, teens and families in Harley Street, Kew and online. Take her online PANS PANDAS course for parents. More info https://lucy-mcdonald.com. This podcast does not replace medical advice.

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.PANS/PANDAS Stories was co-created by Jo Joyner and Lucy McDonald. It is hosted by Lucy, a child and adolescent psychotherapist with a special interest in PANS/PANDAS. She sees children, teens and families in Harley Street, Kew and online. Take her online PANS PANDAS course for parents. More info https://lucy-mcdonald.com. This podcast does not replace 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 or lucy-mcdonald.com

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. PANS/PANDAS Stories was co-created by Jo Joyner and Lucy McDonald. It is hosted by Lucy, a child and adolescent psychotherapist with a special interest in PANS/PANDAS. She sees children, teens and families in Harley Street, Kew and online. Take her online PANS PANDAS course for parents. More info https://lucy-mcdonald.com. This podcast does not replace medical advice.

((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.comPlease 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 herePARENT SURVEYhttps://chapmanu.co1.qualtrics.com/jfe/form/SV_6W4T1lQW5qeda3YCLINICIAN SURVEYhttps://chapmanu.co1.qualtrics.com/jfe/form/SV_eVUFn6VjUP38OYSPANS/PANDAS Stories was co-created by Jo Joyner and Lucy McDonald. It is hosted by Lucy, a child and adolescent psychotherapist with a special interest in PANS/PANDAS. She sees children, teens and families in Harley Street, Kew and online. Take her online PANS PANDAS course for parents. More info https://lucy-mcdonald.com. This podcast does not replace medical advice.

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 

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 PANS/PANDAS Stories was co-created by Jo Joyner and Lucy McDonald. It is hosted by Lucy, a child and adolescent psychotherapist with a special interest in PANS/PANDAS. She sees children, teens and families in Harley Street, Kew and online. Take her online PANS PANDAS course for parents. More info https://lucy-mcdonald.com. This podcast does not replace medical advice.

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.

"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.