PANS/PANDAS STORIES

"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!