PANS/PANDAS STORIES

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.

Julie Cox is the mother of all PANS PANDAS therapists and she has been working with these children and families for the last 20 years after her daughter got the illness. She has poured her personal and professional knowledge and compassion into her therapy work with sufferers. A big part of that is also coaching parents and families on how to survive when the going gets tough - as it frequently does due to the waxing and waning nature of the illness. Sound familiar?!

In this warm chat, Julie weaves in her personal experiences and professional expertise. Explaining how validation for parents is important, emphasising how therapists must work with these children differently and recommending lots of resources (Stephen Porges, Deb Dana, Dan Siegel and Dr Ross Greene). 

I loved chatting with her and was sorry we ran out of time as we had so much to say. The good news is she has promised to come back later in the year. Thank you, Julie! For more information on her therapy practice in NY  https://www.juliecox.org/pandas-pans-therapy-westchester-ny and her global 1:1 parent coaching sessions at www.parentingwithpans.com/coaching She is about to start a membership with video lessons and group support. 

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!

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.

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

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

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.

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**

This week, Jo Joyner talks to Gareth Costello about his daughter Rose who went from a confident, popular girl, who loved school, to a shadow of her former self almost overnight. Gareth describes this change, as a "light switch" moment.

The trigger? A sore throat. He talks about rushing home from work to a changed child, the relief of being listened to by a GP, and how he is giving something back to the PANS/PANDAS community by fundraising.

Listen to how 12-year-old Rose is doing now, in Episode 3 of PANS/PANDAS Stories....

*****Coming up over the next few weeks - interviews with paediatrician, Dr Tim Ubhi, nutritionist and naturopath Lucinda Miller and Jessica's mother, Helen Huitson.*****

******We are planning Series Two of PANS/PANDAS Stories. Thanks to everyone who has responded to the poll. From your feedback, we know you want more chats with sufferers of PANS/PANDAS themselves as well as with experts. Please contact us, if you would like to share your story (DM on our Insta page please!)

*****We've also been asked for a Q&A session with experts and are working out the best way to do this. So again watch this space. ******

*****There is so much we want to do - including interviews with adults, as we know this isn't just a paediatric illness. Interviewees so far have had PANDAS, but IVs with PANS sufferers are also in the pipeline.

***** Thanks so much for your support. We can't do this without you, so please rate and follow us, to help spread the word, provide support to parents and sufferers, and raise awareness.*****

Lucy and Jo xxxx

In Episode Two Lucy meets Jessica, a warm and courageous 14 year old with PANDAS. Her initial symptoms were tics and anxiety, but progressed to multiple non-epileptic seizures every day. She talks about having a "pet panda in her brain that causes havoc" and how her PANDAS diagnosis was the worst day of her life.

IVIg - Intravenous immunoglobulin - an immunotherapy that can help some people with PANS/PANDAS

EDS - Ehlers-Danlos syndrome is a disease that weakens the connective tissues of your body