Our Journey to a PANDAS Diagnosis | A Parent’s Story from Instagram's Parenting_PANDAS
PANS/PANDAS STORIES19 Joulu 2024

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!

Tämä jakso on lisätty Podme-palveluun avoimen RSS-syötteen kautta eikä se ole Podmen omaa tuotantoa. Siksi jakso saattaa sisältää mainontaa.

Jaksot(28)

Maternal anxiety, when the burden becomes the blame, and holding the biological frame. My speech at the PANS PANDAS UK conference

Maternal anxiety, when the burden becomes the blame, and holding the biological frame. My speech at the PANS PANDAS UK conference

I had 10 minutes to speak about how to support parents at the PANS PANDAS UK Conference in October. In reality I could have spoken for hours on this subject. I think supporting parents is such a big p...

28 Loka 11min

Expert: Paediatric PANS & OCD specialist Barb Shephard talks ERP

Expert: Paediatric PANS & OCD specialist Barb Shephard talks ERP

** NOTE - IN THIS EPISODE I say that inference-based CBT is not evidence-based. This is wrong. I meant it is not evidence-based in children yet (although that work is underway) but it is evidence-info...

23 Syys 52min

OCD Special: I-CBT - Suicidal Intrusive Thoughts with Therapist Angela Henry

OCD Special: I-CBT - Suicidal Intrusive Thoughts with Therapist Angela Henry

OCD and PANS PANDAS specialist Angela Henry talks about treating OCD using I-CBT. This is a different approach that focuses on doubt – particularly how OCD can make us distrust what we know through ou...

10 Syys 1h

The Day Our Children Changed Overnight: Two Mothers on PANS/PANDAS

The Day Our Children Changed Overnight: Two Mothers on PANS/PANDAS

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 t...

6 Heinä 1h 14min

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 Touko 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 Touko 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 Huhti 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 Maalis 54min

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