10 episodes
PANS/PANDAS STORIES Jo Joyner and Lucy McDonald
-
- Health & Fitness
-
-
5.0 • 9 Ratings
-
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.
-
Ep 9: IV with Amy Joy Smith on the enemy within - mould and PANS
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!
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message -
Ep 8: Rheumatologist Dr Jennifer Frankovich details little-known signs of inflammation for PANS
Lucy McDonald here,
This conversation was mind-blowing for me. I have long known of the rheumatologist Jennifer Frankovich's work, but in this chat, she taught me so much about PANS. Well specifally PANDAS. She treats children with sudden onset in The Bay Area of California, and her team of experts are so in demand they only take one in ten referrals. They have ultrasound experts trained to look specifically for inflammation, and Jennifer is passionate about uncovering what is causing the inflammation, so that can be treated and recovery possible. It is cutting-edge work, and she is collating information on patients so there will be a body of research.
We briefly talk about the potential connection between PANS/PANDAS and IVF. She also wonders why doctors no longer screen for Strep when its link to inflammation and mood is long documented.
She also shares symptoms parents can either look out for, or alert doctors to, which suggest underlying inflammation. These include a rash, unexplained aches, and delayed reflexes. She will come back to PANS/PANDAS Stories later in the year, with a guide to help parents advocate for treatment.
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message -
Ep 7: IV with Stella Chadwick - "I'm like a detective, working out the root cause"
Hello, Lucy here with Episode 1 of our Easter mini-series.
This week, I talk to functional practitioner and nutritionist, Stella Chadwick. Stella talks about her journey to treating PANS/PANDAS after a family member got sick 18 years ago. She says her job is like being a detective and how she loves working backwards to find out what may have gone wrong with a child's health, as well as preventative measures to ensure good health. Particular highlights for me were
Time codes 13-14min talking about Robert Nauivx's Cell Nerve Danger Response paper
17min - how to prevent PANS PANDAS if some early triggers are there
19min - food intolerances and cleaning up the diet
22min treating inflammation
26 - micro immunotherapy - papers to back up Stella's passion on the Brainstorm website https://www.brainstormhealth.co.uk/
30 anaesthetic protocol. Potential impact of laughing gas on labour
This is a fabulous paper and easy to read
https://naviauxlab.ucsd.edu/wp-content/uploads/2020/02/Naviaux-CDR-Environmental-Health_2019.pdf
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message -
Episode 6 - Dr Tim Ubhi explains how to treat PANS/PANDAS
Hello everyone
In our last podcast of our first series, Lucy speaks to Dr Tim Ubhi. He is well-known here in the UK as a passionate advocate for PANS/PANDAS, and has played a large part in many people's recovery. He has one of the largest cohorts of PANS/PANDAS patients and in this episode he talks about how he believes Strep is the trigger - even in PANS, a course of action for treatment, and the growth of his clinic to include Cognitive Behavioural Therapy for OCD and EMG for treating tics.
Below are a selection of papers he regularly refers to and/or have inspired his practice.
We are currently recording series 2, so we will keep you posted.
All the best
Lucy and Jo x
References
Thienemann M, Murphy T, Williams K, Leckman J, Shaw R, Geller D, Kapphahn C, Frankovich J, Elia J, Chang K, Hommer R, Swedo S: Clinical management of pediatric acute-onset neuropsychiatric syndrome (PANS): Part I-Psychiatric and behavioral interventions. J Child Adolesc Psychopharmacol 2017. [Epub ahead of print]; DOI: 10.1089/cap.2016.0145
Frankovich, J., Swedo, S., Murphy, T., et al., 2017. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part II—use of immunomodulatory therapies. J. Child. Adolesc. Psychopharmacol. http://dx.doi.org/10.1089/cap.2016.0148.
Cooperstock, M.S., Swedo, S.E., Pasternack, M.S., et al., 2017. Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part III—Treatment and prevention of infections. J. Child. Adolesc. Psychopharmacol. http://dx.doi.org/10.1089/cap. 2016.0151.
Obregon D, Parker-Athill EC, Tan J, Murphy T: Psychotropic effects of antimicrobials and immune modulation by psychotropics: Implications for neuroimmune disorders. Neuropsychiatry (London) 2:331–343, 2012.
Van Mater H: Pediatric inflammatory brain diseases: A diagnostic approach. Curr Opin Rheumatol 26:553–561, 2014.
Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE: Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. PANS Collaborative Consortium. J Child Adolesc Psychopharmacol 25:3–13, 2015.
Leckman JF, Riddle MA, Hardin MT, Ort SI, Swartz KL, Stevenson J, et al. The Yale Global Tic Severity Scale: initial testing of a clinician-rated scale of tic severity. J Am Acad Child Adolesc Psychiatry. [Research Support, Non-U.S. Gov't Research Support, U.S. Gov't, P.H.S.]. 1989 Jul;28(4):566-73.
Storch EA, McGuire JF, Wu MS, Hamblin R, McIngvale E, Cepeda SL, et al. Development and Psychometric Evaluation of the Children's Yale-Brown Obsessive-Compulsive Scale Second Edition. J Am Acad Child Adolesc Psychiatry. [Evaluation Study Research Support, N.I.H., Extramural]. 2019 Jan;58(1):92-8.
Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their Activity
J. Xu, R. J. Liu, S. Fahey, L. Frick, J. Leckman, F. Vaccarino, et al.
The American journal of psychiatry 2021 Vol. 178 Issue 1 Pages 48-64
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message -
Episode 5- PANDAS mum, Helen Huitson charts her daughter's illness
In our fifth PANS/PANDAS Stories, Lucy McDonald chats with Helen Huitson, a PANS/PANDAS mother and campaigner from the NE of England. She is the mother of the wonderful Jessica, Lucy spoke to in Episode 2. In the podcast, we discuss the terrifying progression of Jessica's illness, what has helped Helen survive it and fight for others to get support. Helen can rarely leave Jessica's side, except when she is at school, as her fits and tics are so frequent. Hers is a story of courage and hope. Hope it helps.
Lucy x
If your child has developed sudden anxiety OCD or tics, this is the podcast for you. If you are worried you or your child may have PANS/PANDAS, please visit the PANS/PANDAS charity page https://panspandasstories.com
Next week - Dr Tim Ubhi talks about why he now believes strep is the root cause of all PANS infections, the development of his clinic and what to do if you suspect someone you know has PANS/PANDAS.
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message -
Episode 4 - Jo Joyner talks to Lucinda Miller about how to heal the immune system naturally
Jo Joyner talks to naturopath Lucinda Miller about the healing power of food. Lucinda has helped hundreds of families, including Jo's, and focuses on feeding the brain, the immune system and the gut microbiome.
Find out how she helps children in this week's episode of the PANS/PANDAS Stories.
Lucinda also talks about her own journey back to wellness after burnout and how her recovery inspired her new career.
**FANFARE** We celebrated 1000 listens on Friday, so a huge thank you to everyone. If you like the podcast and want friends and families to understand PANS/PANDAS a little better, please share! Thanks
Lucy and Jo xx
** Lucinda's Clinic - NatureDoc - https://naturedoc.com**
** She has written two excellent cookbooks - The Good Stuff and I Can't Believe It's Baby Food - both available here - https://naturedoc.shop/product/the-good-stuff/ **
**Next week we talk to the inspirational Helen Hutson, Jessica's mother, before ending the series with the wonderful Dr Tim Ubhi**
---
Send in a voice message: https://podcasters.spotify.com/pod/show/lucy-mcdonald4/message
Customer Reviews
Excellent Content - Awful Audio Quality
This content is incredible and helpful. Thank you for your commitment to raise awareness for PANDAS. My 12yo son has been on this horrible journey since his strep diagnosis in March of 2023. With a challenge of finding a pediatrician who recognizes PANDAS in Minnesota, we are now going back and forth to Colorado every three weeks as we are committed to getting our son the treatment he needs. We need more awareness and appreciate you both for doing this.
Please consider investing in better audio recording equipment. I have the volume at the max and the output is quiet until you laugh. The laughter blows my speakers out. I am happy to discuss an investment in equipment with you if it helps you continue this journey and pursuit of awareness. Our children and families need it.
What a gift. Thank you!
We are at the beginning of exploring PANS/PANDAS as a diagnosis for one of our children. Your stories brought me to tears throughout, but left me with hope.
I am a fellow parent trying to find answers for our child’s constellation of sudden medical/psychiatric issues, and not once has a provider brought this up as a possibility. We’re on waiting lists to be evaluated but I’m so frustrated our child - and family - have suffered for more than a year. My child is hospitalized right now and I feel like I’m still getting blank stares from nurses and doctors when I bring it up.
Keep up the great work, and know you’re doing life-saving work by getting these stories out to the public.
Top Podcasts In Health & Fitness
You Might Also Like