PANS/PANDAS STORIES

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.

((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 SURVEY
https://chapmanu.co1.qualtrics.com/jfe/form/SV_6W4T1lQW5qeda3Y
CLINICIAN SURVEY
https://chapmanu.co1.qualtrics.com/jfe/form/SV_eVUFn6VjUP38OYS

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

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.