PANS Australia

Hot off the press! 🌟 Another piece of the puzzle for PANS: New research strengthens the link to an inflammatory, organic cause, suggesting that PANS is not just a neuropsychiatric disorder but part of a broader systemic condition. This finding could lead to more targeted treatments in the future.

Check out this insightful blog offering practical advice for parents on navigating the intricate phases of and .

This blog is written from the perspective of an occupational therapist but provides a relevant framework for a wide range of professionals. 🌟

🔗 Read the blog here: https://www.steppingstonesforchildren.com.au/supporting-your-child-with-pans-pandas-an-occupational-therapy-perspective/

🌟 New Blog Alert! 🌟

Parenting a child with PANS/PANDAS can be challenging, but you don’t have to navigate it alone.

Our latest blog post, "Supporting Your Child with PANS/PANDAS: An Occupational Therapy Perspective," breaks down how to support your child through each phase of this complex condition.

From flare-ups to recovery, discover strategies to help your child every step of the way. 👩‍👦

🔗 Read the full post here: https://www.steppingstonesforchildren.com.au/supporting-your-child-with-pans-pandas-an-occupational-therapy-perspective/

Check out this fantastic podcast episode discussing the relationship between immune dysfunction and eating disorders (and specifically PANS PANDAS), and some very important PP research being conducted by Dr Breithaupt - a Clinical Psychologist from the US. This research is not only working to help further define the PP phenotype, but also hoping to establish a PP biomarker. This is a must listen!

https://podcasts.apple.com/us/podcast/untangling-pandas-pans-conversations-about-infection/id1740004590?i=1000651677595

🌟 A heartfelt thank you to everyone in the PANS Australia community who took the time to provide feedback on Professor Dale and his team's MRFF grant proposal! 🌟

Your insights are invaluable and have highlighted three key themes:

• Appreciation for Research and Call for Further Studies: Many respondents express gratitude for the research being conducted on PANS and the hope it brings to affected families. They also emphasise the need for more in-depth studies to understand the condition better and to validate treatments.

• Effectiveness of Treatments: There is a strong focus on the effectiveness of ibuprofen and azithromycin in treating children with PANS, with many respondents indicating relief of symptoms. Three respondents commented on Butyrate, providing feedback that it had a positive effect on their child’s PANS symptoms.

• Recognition and Awareness: Feedback frequently mentioned the patient journey and struggles with the lack of recognition of PANS by healthcare and other professionals. There is a clear call for increased awareness and education among general practitioners and paediatricians to better diagnose and understand PANS, as well as frustration over the scepticism faced by families when seeking help.

Your feedback will not only help shape the current grant proposal, but also guide future PANS research carried out by Professor Dale and his very awesome team. 👨‍⚕️👩‍⚕️🧑‍⚕️

Together, we're making strides towards better understanding and treating PANS. Thank you for your continued support! 💙

🌈 Spotlight on Research: Family Quality of Life When Raising a Child with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS) 🌈

Diving into the intricate challenges of PANDAS/ PANS, this study uncovers the profound effects on families, often left in the shadows of misdiagnosis and misunderstanding. Through in-depth interviews with six families, the authors explore the seismic shifts in daily life and the emotional turmoil that comes with navigating PANDAS/ PANS. 🚀

Themes like 'Life Suddenly Turned Upside Down' and 'Emotional Distress within the Family' highlight the resilience and struggles of these families. This research aims to illuminate the path for better support, understanding, and occupational therapy strategies to enhance the quality of life for these families. 🌟

Join us in spreading awareness and compassion for families affected by PANS/ PANDAS. Let's make a difference together! 💖

Article link here: https://www.tandfonline.com/doi/full/10.1080/19411243.2019.1592052

Check out this new study that provides evidence on the differences in sensory reactivity among children with PANS during periods of exacerbation and remission.

It emphasises the importance of occupational therapy evaluations tailored to each child's sensory needs for improved care.

Be sure to share with your child's therapists, doctors and teachers!

Open access available here: https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12935

Research Update – Clinical Neuroimmunology Group, Children’s Hospital at Westmead and University of Sydney

The Clinical Neuroimmunology Group, led by Prof Russell Dale, at the Children’s Hospital at Westmead (Sydney) is preparing a research grant proposal focusing on developing new treatments for children with PANS. Please click the link below to find out more about this project and provide your feedback.

https://redcap.sydney.edu.au/surveys/?s=JRPMRKCHTXML9DM9

PANS Australia PANS/ PANDAS Parent Support Group

PANS in the Australian media - featuring Professor Russell Dale's PANS CBD research.

Neurotech treatment looks to be making a difference in children with PANDAS/PANS Sponsored content

The latest edition of the Journal of Child and Adolescent Psychopharmacology, has 3 dedicated PANS papers plus an editorial. Check it out here: https://www.liebertpub.com/toc/cap/33/9

𝐎𝐮𝐫 𝐃𝐞𝐜𝐞𝐦𝐛𝐞𝐫 𝐬𝐩𝐞𝐚𝐤𝐞𝐫 𝐢𝐬 𝐃𝐫. 𝐒𝐡𝐚𝐤𝐢𝐥𝐥𝐚 𝐒𝐡𝐞𝐭𝐭𝐲 𝐰𝐡𝐨 𝐰𝐢𝐥𝐥 𝐛𝐞 𝐝𝐢𝐬𝐜𝐮𝐬𝐬𝐢𝐧𝐠 𝐏𝐚𝐞𝐝𝐢𝐚𝐭𝐫𝐢𝐜 𝐍𝐞𝐮𝐫𝐨𝐢𝐦𝐦𝐮𝐧𝐞 𝐂𝐨𝐧𝐝𝐢𝐭𝐢𝐨𝐧𝐬 (𝐏𝐀𝐍𝐒/𝐏𝐀𝐍𝐃𝐀𝐒): 𝐓𝐡𝐞 𝐈𝐦𝐩𝐚𝐜𝐭 𝐨𝐧 𝐁𝐞𝐡𝐚𝐯𝐢𝐨𝐮𝐫, 𝐀𝐭𝐭𝐞𝐧𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐅𝐨𝐜𝐮𝐬

This talk will include a discussion of neuroimmune conditions, how and why they affect children, and the functional impact they can have from a behavioural and developmental perspective. It will also include an analysis of current therapeutic options.

Dr Shalika Shetty is a holistic paediatrician based at Nextpractice Genbiome. Her interests include general paediatric medical concerns, lifestyle medicine, behavioural and learning issues, neuroimmune conditions, allergy and atopy, gut health, and neonatal concerns including feeding and settling.

Please note there will be NO recording or replay of this event. The talk will only be available live.

Professionals attending will receive a Certificate of Attendance to help them keep track of their professional development.

I invite you to join me in delving into this most important topic.

Again, please remember there will be no replay or recording of this event available after it ends. The live discussion and presentation can only be seen in live.

To find out more/book tickets visit the website: https://www.adhdsupportaustralia.com.au/events/

Unable to attend and would like to see a recording of this and past talks?

Check out our Patreon membership site:
https://www.patreon.com/ADHDSupportAustralia

Join our Newsletter list to receive news of events/meetups/slides:
http://eepurl.com/iqqlow

The talk commences Thursday 7th December 2023 @ 7pm AEDT (Sydney time) so if you are not in this time zone please check using the following link the time this will be for you.

I look forward to seeing you there – Vivian

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‎PANS/PANDAS STORIES: Episode 6 - Dr Tim Ubhi explains how to treat PANS/PANDAS on Apple Podcasts ‎Show PANS/PANDAS STORIES, Ep Episode 6 - Dr Tim Ubhi explains how to treat PANS/PANDAS - 13 Nov 2023

How common viruses can make the body attack the brain Two years ago Fleur Senior, then 14, was considered by her teachers to be on course to read maths at Oxford University.

Hot off the press - a study out of Sweden that explores the lived experience of children with PANS.

"The conclusions are that PANS has major negative consequences for the children’s well-being, and they experience limited possibilities to manage the symptoms. Flexible and personally adjusted treatments, and caregivers who are a stable source of support, are empowering."

Professor Russell Dale is a world leading neurologist and researcher from the Children's Hospital at Westmead in Sydney, Australia. Check out this article to learn about Professor Dale's research and his thoughts about the role of the immune system in the development of neurodevelopmental conditions like Autism, PANS, OCD and Tourette syndrome.

https://www.sydney.edu.au/medicine-health/news-and-events/2023/11/10/rethinking-neurodevelopment-how-the-immune-system-sculpts-the-brain.html

Did you know that 5% of children attending an outpatient OCD clinic met the clinical criteria for PANS.

Find out more here: https://pubmed.ncbi.nlm.nih.gov/28121463/

Did you know that 11% of children attending a tic clinic met the clinical criteria for PANS?

Find out more here: https://pubmed.ncbi.nlm.nih.gov/10913730/

Did you know that 52% of children attending an eating disorders clinic met the clinical criteria for PANS?

Find out more here: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-022-00707-6

Attention Parents and Guardians of children with PANS/PANDAS- The University at Buffalo occupational therapy program is conducting a study of caregiver experiences and stress among parents / guardians of children with PANS. If you have a child between the ages of 5-21, please consider taking this 20-minute online survey. Results can help to pave the way for improved programming and support for families. We are planning to collect data until April 1, 2022 Please see the this flyer https://drive.google.com/.../1E-Gz4KHe_7.../view... for information. You can click on this link to access the consent form and survey. https://redcap.buffalo.edu/redcap/surveys/?s=AMXCPK8FYH Please share with other families of children with PANS/PANDAS. Please contact Dr. Janice Tona, PhD, OTR at [email protected] or 716-829-6741 if you have any questions.

PANS/PANDAS Caregiver Survey Office of Research Compliance | Clinical and Translational Research Center Room 5018875 Ellicott St. | Buffalo, NY 14203UB Federalwide Assurance ID #: FWA00008824

Happy New Year from PANS Australia 🥳

We are so grateful to everyone who who supported our 2021 PANS Australia Conference. Not only did this conference help to raise awareness of PANS across the world, but it also helped Professor Dale and the Kids Neuroscience Centre at to progress their PANS research. So far PANS Australia has donated $21,855 from the profits of our conference, and Prof Dale and his team are using these funds for their current IVIg PANS study.

We are proud to support the PANS community through our fundraising efforts!

Don't forget, tickets are still available to view the PANS Australia Conference recordings at www.pansaustralia.com. Access to the conference will close 31st January.

Wishing everyone a safe, healthy and happy 2022!

PANS Australia Conference access extended!

We are happy to let everyone know that access to the PANS Australia conference recordings has been extended to the 31st January. Tickets holders are able to use their existing logins to access these recordings.

If you don't have a ticket, you can still purchase one from www.pansaustralia.com.

Ever wondered about the history of PANS?

The History of PANDAS/PANS and PANDAS Network Looking to learn more about the history of PANDAS/PANS and what the PANDAS Network does? Click here to find out more.

Our friends at have hit the nail on the head with this quote 👏👏👏

Madison's story is important. It's is the story of a child who received the correct diagnosis and therefore the correct treatment. That child is now an inspired adult with a bright future! All children with PANS should have the option for a bright future.

Madison Describes How PANDAS Turned Her Life Upside Down When Madison was 10, she became a completely different person after a short illness. Now, in her own words, she relates her struggles with PANDAS.

Vale, Eddie Jaku 👏👏👏

From the mouths of our brave PANS kiddos 🥺💔 Swipe 👉 to read them all, to gain an insight in to what life with PANS can be like.

Today is PANS Awareness Day! Help us spread the word about PANS by sharing any information on our Facebook and Instagram pages as so few know about this destructive condition. You never know who you will help by sharing one little post.
This afternoon we will be sharing quotes from patients themselves so everyone can understand what living with PANS truly feels like.

So proud to have been able to donate over $20,000 this year from our conference! Such vital research that is being undertaken to try and help our children.

Keonie Moore has nailed it! 👏👏👏
A multidisciplinary approach that is tailored to the specific child is what our PANS kiddos need.

Our diet plays a major role in everyone's health, but it can be a vital piece of the puzzle for PANS kids when you are trying to reduce as much inflammation as possible.

Professor Dale has summed up why so many families end up walking out of many doctors rooms full of frustration and anger.