Our Journey to a PANDAS Diagnosis | A Parent’s Story from Instagram's Parenting_PANDAS

Our Journey to a PANDAS Diagnosis | A Parent’s Story from Instagram's Parenting_PANDAS

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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Avsnitt(24)

IVIG, Rage, and how music heals. Dr Patrick Whelan shares insights PANS PANDAS

IVIG, Rage, and how music heals. Dr Patrick Whelan shares insights PANS PANDAS

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...

18 Maj 56min

Treating the Whole Child: PANS/PANDAS, Neuroinflammation & Hope with Dr. Leila Mason

Treating the Whole Child: PANS/PANDAS, Neuroinflammation & Hope with Dr. Leila Mason

((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...

4 Maj 56min

Evie Meg talks about PANS/PANDAS, encephalitis, dystonia, OCD, Bartonella and Lyme Disease

Evie Meg talks about PANS/PANDAS, encephalitis, dystonia, OCD, Bartonella and Lyme Disease

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 ...

12 Apr 56min

OCD, PANS & Dr Zoe Gillispie: What Parents and Therapists Need to Know

OCD, PANS & Dr Zoe Gillispie: What Parents and Therapists Need to Know

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 ex...

18 Mars 54min

Why Children With PANS Struggle With Everyday Life | Occupational Therapy Explained

Why Children With PANS Struggle With Everyday Life | Occupational Therapy Explained

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 clo...

28 Feb 46min

Living With PANS/PANDAS and Fighting Back | Kirk Lord’s Story

Living With PANS/PANDAS and Fighting Back | Kirk Lord’s Story

"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 disor...

20 Feb 46min

Recovering From PANS/PANDAS: A Teenager’s Story of Hope

Recovering From PANS/PANDAS: A Teenager’s Story of Hope

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 me...

5 Dec 202550min

PANS Flares, Medication and Recovery | Dr Kiki Chang

PANS Flares, Medication and Recovery | Dr Kiki Chang

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 ...

17 Nov 202549min

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