PANS/PANDAS STORIES

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 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/