((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.

"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.

In this episode of PansPandas Stories, host Lucy McDonald interviews Freya Shacklock, a 19-year-old who shares her inspiring journey of recovery from PANS-PANDAS, a condition that caused her severe mental health challenges and physical symptoms from a young age.

Freya discusses the importance of family support, the challenges of navigating treatment, and the hope that comes with finding the right diagnosis. She emphasises the importance of therapy and the ongoing journey of recovery, encouraging others to hold onto hope for a brighter future.

She talks about gettig her first job with the doctor who diagnosed her, Tim Ubhi.

DISCLAIMER! I work with Dr Ubhi too, and met Freya through the clinic. Her comments about her diagnosis and treatment, are all her own, and a testament to the trust and support, she feels to those who helped her heal.

It has been a while since the last PANS PANDAS Stories and our return is marked by an interesting chat with Dr Kiki Chang. He has a long PP pedigree and now works privately in the States where he has been instrumental in treating children and advocating for the illness - both nationally and internationally.

He discussed what NOT to do in a flare, the power of therapy and working with families and, most of all, not giving up.

In the last episode of the year, we talked to Lucy from Parenting_PANDAS on Instagram. Lucy shares her story with her 10,000-strong community, charting the hope and despair of life as a PANDAS parent. Originally posting about Pathological Demand Avoidance, she did not consider the diagnosis until one of her followers suggested PANDAS. Sadly, this is not an uncommon route to diagnosis! Since then, her daughter has had antibiotic treatment and is bumpily recovering. 

It is a testament to her passion for raising awareness that Lucy manages to post about her family's journey, offering support, parenting hacks (dopamine bag, anyone?!), and hope for PANS/PANDAS parents worldwide.

Her insights and commitment are a wonder, and we are thrilled she is on this week’s PANS/PANDAS Stories.

As always, please like and share the podcast to raise awareness.

Happy Christmas and 2025, everyone!

Dr Denis Bouboulis, an allergist and immunologist from the US, has been diagnosing and treating PANS PANDAS for nearly 20 years. He talks about the "wild card" of Covid and how Long Covid could be linked to underlying vector-borne infections, such as Lyme disease.

In the States, there is more awareness and testing around Lyme and co than in the UK, and it certainly made me think about what could be missing from our children's treatment - especially those who do not seem to get significantly better or frequently relapse.

He also discusses how short-term antibiotics to treat PANS/PANDAS is a "false narrative" and how long-term treatment is key for recovery.

Although based in the States, he works via telemedicine across the world.

Here he is on Linkedin https://www.linkedin.com/in/dr-denis-bouboulis/recent-activity/all/

Jo Joyner speaks to Education Expert Tina Coope from the UK charity about helping children at school. She has good tips about how to speak to schools and help teachers understand how to help these children.

If you have any ideas about other educational aspects you would like covered please let us know in the comments. Also please review if you can - it helps others find our podcasts more easily.

For more info PANS PANDAS UK also have a range of educational resources available, including free online CPD-accredited teacher training (donations are optional but appreciated). Check them out here: https://panspandasuk.org/support-resources/for-educational-professionals/  A wealth of information for allied professionals, families, adults, young people and children is also available here- https://panspandasuk.org

 A PANS, PANDAS Education, Social Care and Health Group (ESCHG) is also working on putting together a position statement and some helpfulguidance for Local Authorities. You can find more information here: https://panspandasuk.org/post/efforts-underway-to-support-families-and-professionals-across-education-social-care-and-health-to-develop-a-position-statement-on-pans-and-pandas/