Welcome to The PANS/PANDAS Stories. In the first series, actor and charity campaigner Jo Joyner, and child counsellor and journalist, Lucy McDonald, meet childr...
Lucy from Instagram's Parenting_PANDAS talks about her family's journey
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!
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37:28
Immunologist Dr Denis Bouboulis talks about long-term treatment and the link with Lyme
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/
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47:25
Education expert Tina Coope from PANS/PANDAS UK
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 helpful
guidance 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/
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30:15
Psychologist Naomi Fisher talks about school and low demand parenting
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!
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56:15
Nutritionist Lucinda Miller on brain health, histamine, and the healing power of good food
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.
Welcome to The PANS/PANDAS Stories. In the first series, actor and charity campaigner Jo Joyner, and child counsellor and journalist, Lucy McDonald, meet children and families affected by this neuropsychiatric disorder. They also interview experts at the cutting edge of treatment. Awareness is growing, and the pair hope this podcast will offer hope and support to sufferers as they navigate an often long and complicated road to recovery.
Disclaimer - Episodes can contain upsetting themes.
It does not replace medical advice.
Ireland