PANS/PANDAS STORIES

((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_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/  

Brilliant chat with Naomi Fisher about low demand-parenting, how parents unwittingly create pressure for their children, how to choose the right school, how to collaborate when things go wrong, and why saying less can be the hardest lesson for parents!

Lucinda Miller is back to talk about her new book Brain Brilliance. It looks at how what you eat affects your health and mood. The book is described as a nutritional toolkit for neurodivergent kids, and is full of healthy and delicious recipes, as well as chapters on what to eat for certain symptoms. It is heavily academically-referenced (550, I think!), and she recommends nutrients and foods that support the immune system. She talks about every day supplements most children can tolerate, growing incidences of high-histamine and what this means, the three different stages of immunity and how to move children back into a place of safety and out of auto-immune issues through diet and supplementation. Some links about things we spoke about... Here is me from my time as a food blogger - at Crumbs Food - making Cake in a Cup. Here is the study on auto immunity, and the Adverse Childhood Experience Study Next month is devoted to PANS PANDAS and education. We kick off a mini series with Naomi Fisher and her latest book When The Naughty Step Makes Things Worse. Then we have PANS PANDAS UK's very own Tina Coope who has loads of good tips, and whose work on the charity's education and care steering group will make a real difference to many of our community's lives.

Julie Cox is the mother of all PANS PANDAS therapists and she has been working with these children and families for the last 20 years after her daughter got the illness. She has poured her personal and professional knowledge and compassion into her therapy work with sufferers. A big part of that is also coaching parents and families on how to survive when the going gets tough - as it frequently does due to the waxing and waning nature of the illness. Sound familiar?!In this warm chat, Julie weaves in her personal experiences and professional expertise. Explaining how validation for parents is important, emphasising how therapists must work with these children differently and recommending lots of resources (Stephen Porges, Deb Dana, Dan Siegel and Dr Ross Greene). I loved chatting with her and was sorry we ran out of time as we had so much to say. The good news is she has promised to come back later in the year. Thank you, Julie! For more information on her therapy practice in NY  https://www.juliecox.org/pandas-pans-therapy-westchester-ny and her global 1:1 parent coaching sessions at www.parentingwithpans.com/coaching She is about to start a membership with video lessons and group support. 

Amy Joy Smith is a legend in the community, and one of the first practitioners to help children heal from PANS/PANDAS. She has helped hundreds of families, and her compassionate, rigorous approach ensures that children get better. In this episode she talks about mould - or more specifically the mycotoxins that certain moulds release, that can be so damaging to health. She talks about her personal journey with mould, how to treat it, and the most important thing....."getting out" - leaving the mouldy environment. I've known Amy for many years and loved speaking with her.She mentions Dr Shoemaker's survivingmold.com website as a good resource.Her website is here but she has a long waiting list.Hope you enjoy it!

Lucy McDonald here, This conversation was mind-blowing for me. I have long known of the rheumatologist Jennifer Frankovich's work, but in this chat, she taught me so much about PANS. Well specifally PANDAS. She treats children with sudden onset in The Bay Area of California, and her team of experts are so in demand they only take one in ten referrals. They have ultrasound experts trained to look specifically for inflammation, and Jennifer is passionate about uncovering what is causing the inflammation, so that can be treated and recovery possible. It is cutting-edge work, and she is collating information on patients so there will be a body of research. We briefly talk about the potential connection between PANS/PANDAS and IVF. She also wonders why doctors no longer screen for Strep when its link to inflammation and mood is long documented. She also shares symptoms parents can either look out for, or alert doctors to, which suggest underlying inflammation. These include a rash, unexplained aches, and delayed reflexes. She will come back to PANS/PANDAS Stories later in the year, with a guide to help parents advocate for treatment.

Hello, Lucy here with Episode 1 of our Easter mini-series. This week, I talk to functional practitioner and nutritionist, Stella Chadwick. Stella talks about her journey to treating PANS/PANDAS after a family member got sick 18 years ago. She says her job is like being a detective and how she loves working backwards to find out what may have gone wrong with a child's health, as well as preventative measures to ensure good health. Particular highlights for me were Time codes 13-14min talking about Robert Nauivx's Cell Nerve Danger Response paper 17min - how to prevent PANS PANDAS if some early triggers are there 19min - food intolerances and cleaning up the diet22min treating inflammation 26 - micro immunotherapy - papers to back up Stella's passion on the Brainstorm website https://www.brainstormhealth.co.uk/30 anaesthetic protocol. Potential impact of laughing gas on labourThis is a fabulous paper and easy to read https://naviauxlab.ucsd.edu/wp-content/uploads/2020/02/Naviaux-CDR-Environmental-Health_2019.pdf

Hello everyoneIn our last podcast of our first series, Lucy speaks to Dr Tim Ubhi. He is well-known here in the UK as a passionate advocate for PANS/PANDAS, and has played a large part in many people's recovery. He has one of the largest cohorts of PANS/PANDAS patients and in this episode he talks about how he believes Strep is the trigger - even in PANS, a course of action for treatment, and the growth of his clinic to include Cognitive Behavioural Therapy for OCD and EMG for treating tics. Below are a selection of papers he regularly refers to and/or have inspired his practice.We are currently recording series 2, so we will keep you posted.All the bestLucy and Jo xReferencesThienemann M, Murphy T, Williams K, Leckman J, Shaw R, Geller D, Kapphahn C, Frankovich J, Elia J, Chang K, Hommer R, Swedo S: Clinical management of pediatric acute-onset neuropsychiatric syndrome (PANS): Part I-Psychiatric and behavioral interventions. J Child Adolesc Psychopharmacol 2017. [Epub ahead of print]; DOI: 10.1089/cap.2016.0145Frankovich, J., Swedo, S., Murphy, T., et al., 2017. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part II—use of immunomodulatory therapies. J. Child. Adolesc. Psychopharmacol.  http://dx.doi.org/10.1089/cap.2016.0148.Cooperstock, M.S., Swedo, S.E., Pasternack, M.S., et al., 2017. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part III—Treatment and prevention of infections. J. Child. Adolesc. Psychopharmacol. http://dx.doi.org/10.1089/cap. 2016.0151.Obregon D, Parker-Athill EC, Tan J, Murphy T: Psychotropic effects of antimicrobials and immune modulation by psychotropics: Implications for neuroimmune disorders. Neuropsychiatry (London) 2:331–343, 2012.Van Mater H: Pediatric inflammatory brain diseases: A diagnostic approach. Curr Opin Rheumatol 26:553–561, 2014.Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE: Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. PANS Collaborative Consortium. J Child Adolesc Psychopharmacol 25:3–13, 2015.Leckman JF, Riddle MA, Hardin MT, Ort SI, Swartz KL, Stevenson J, et al. The Yale Global Tic Severity Scale: initial testing of a clinician-rated scale of tic severity. J Am Acad Child Adolesc Psychiatry. [Research Support, Non-U.S. Gov't Research Support, U.S. Gov't, P.H.S.]. 1989 Jul;28(4):566-73.Storch EA, McGuire JF, Wu MS, Hamblin R, McIngvale E, Cepeda SL, et al. Development and Psychometric Evaluation of the Children's Yale-Brown Obsessive-Compulsive Scale Second Edition. J Am Acad Child Adolesc Psychiatry. [Evaluation Study Research Support, N.I.H., Extramural]. 2019 Jan;58(1):92-8.Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their ActivityJ. Xu, R. J. Liu, S. Fahey, L. Frick, J. Leckman, F. Vaccarino, et al.The American journal of psychiatry 2021 Vol. 178 Issue 1 Pages 48-64

In our fifth PANS/PANDAS Stories, Lucy McDonald chats with Helen Huitson, a PANS/PANDAS mother and campaigner from the NE of England. She is the mother of the wonderful Jessica, Lucy spoke to in Episode 2. In the podcast, we discuss the terrifying progression of Jessica's illness, what has helped Helen survive it and fight for others to get support. Helen can rarely leave Jessica's side, except when she is at school, as her fits and tics are so frequent. Hers is a story of courage and hope. Hope it helps. Lucy xIf your child has developed sudden anxiety OCD or tics, this is the podcast for you. If you are worried you or your child may have PANS/PANDAS, please visit the PANS/PANDAS charity page https://panspandasstories.comNext week - Dr Tim Ubhi talks about why he now believes strep is the root cause of all PANS infections, the development of his clinic and what to do if you suspect someone you know has PANS/PANDAS.

Jo Joyner talks to naturopath Lucinda Miller about the healing power of food. Lucinda has helped hundreds of families, including Jo's, and focuses on feeding the brain, the immune system and the gut microbiome. Find out how she helps children in this week's episode of the PANS/PANDAS Stories.Lucinda also talks about her own journey back to wellness after burnout and how her recovery inspired her new career. **FANFARE** We celebrated 1000 listens on Friday, so a huge thank you to everyone. If you like the podcast and want friends and families to understand PANS/PANDAS a little better, please share! ThanksLucy and Jo xx** Lucinda's Clinic - NatureDoc - https://naturedoc.com**** She has written two excellent cookbooks - The Good Stuff and I Can't Believe It's Baby Food - both available here - https://naturedoc.shop/product/the-good-stuff/ ****Next week we talk to the inspirational Helen Hutson, Jessica's mother, before ending the series with the wonderful Dr Tim Ubhi**

This week, Jo Joyner talks to Gareth Costello about his daughter Rose who went from a confident, popular girl, who loved school, to a shadow of her former self almost overnight. Gareth describes this change, as a "light switch" moment.The trigger? A sore throat. He talks about rushing home from work to a changed child, the relief of being listened to by a GP, and how he is giving something back to the PANS/PANDAS community by fundraising.Listen to how 12-year-old Rose is doing now, in Episode 3 of PANS/PANDAS Stories.... *****Coming up over the next few weeks - interviews with paediatrician, Dr Tim Ubhi, nutritionist and naturopath Lucinda Miller and Jessica's mother, Helen Huitson.***********We are planning Series Two of PANS/PANDAS Stories. Thanks to everyone who has responded to the poll. From your feedback, we know you want more chats with sufferers of PANS/PANDAS themselves as well as with experts. Please contact us, if you would like to share your story (DM on our Insta page please!) *****We've also been asked for a Q&A session with experts and are working out the best way to do this. So again watch this space. ***********There is so much we want to do - including interviews with adults, as we know this isn't just a paediatric illness. Interviewees so far have had PANDAS, but IVs with PANS sufferers are also in the pipeline.***** Thanks so much for your support. We can't do this without you, so please rate and follow us, to help spread the word, provide support to parents and sufferers, and raise awareness.*****Lucy and Jo xxxx

In Episode Two Lucy meets Jessica, a warm and courageous 14 year old with PANDAS. Her initial symptoms were tics and anxiety, but progressed to multiple non-epileptic seizures every day. She talks about having a "pet panda in her brain that causes havoc" and how her PANDAS diagnosis was the worst day of her life. IVIg - Intravenous immunoglobulin - an immunotherapy that can help some people with PANS/PANDASEDS - Ehlers-Danlos syndrome is a disease that weakens the connective tissues of your body

Who better to start the series than Vicky Burford, who runs the PANS/PANDAS UK charity? She talks to Jo about how her son Gregory had a flu-type bug on holiday in Tenerife aged 12, and developed serious neuropsychiatric symptoms shortly after.

Hello and welcome to Jo Joyner and Lucy McDonald's podcast on PANS/PANDAS. In this introduction to the first series of the PANS/PANDAS Stories, Jo and Lucy discuss how they met and how a shared interest in brain health led to a podcast about this devastating illness. Over six episodes, they meet children and families affected and the doctors and experts who treat them. PANS/PANDAS stands for Paediatric Autoimmune Neuropsychiatric Dysfunction/(associated with Strep). It is a neuropsychiatric disorder caused by a virus, bacteria or pathogen attacking the brain, whose symptoms include OCD, anxiety, tics and seizures.Episodes air on a Monday, and our first chat coincides with World PANS/PANDAS Awareness Day and is with the UK PANS/PANDAS Charity founder - Vicky Burford, who talks about her son's illness and incredible recovery.See you there,Lucy and Jo