PANS/PANDAS STORIES

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 tryin...

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 l...

((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...

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...

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...

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,...

"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. T...

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...

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,...

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,...

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 b...

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. F...

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...

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 do...

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...

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 s...

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 preventativ...

Hello everyone In 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...

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 wh...

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...

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 t...

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 P...

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 Paedi...