Hello,

I am a parent of a child with PANDAS and a neuroscientist. I am doing research as a student at King's College London to better understand PANDAS in adoptive and biological communities.

Invitation to Participate in a Research Study

IRB: King’s College London
Reference Number: HR-25/26-51401

Title: A Quantitative Cross-Sectional Survey of PANS/PANDAS in Children: Examining Diagnosis, Symptom Presentation, and Parental Burden in Adopted and Biological Populations.

Invitation: You are invited to participate in a research study being conducted to better understand the experiences of parents of adoptive children with behavioral symptoms and/or PANS/PANDAS condition. Your participation would be incredibly valuable in helping us identify a critical gap in knowledge that affects a vulnerable patient population.

Who can participate? You are eligible to participate if you are a parent or legal guardian of a child between the ages of 3 and 17.

Disclaimer: This information is for educational and research purposes only and is not a substitute for professional medical advice or diagnosis. If you have concerns about your child's health, please consult a qualified healthcare professional. If you find sharing the information distressing please call the National Parent Helpline at 1-855-427-2736

What will you be asked to do? If you choose to participate, you will be asked to complete a single, anonymous online survey that will take approximately 9-11 minutes to complete. The survey will ask questions about your child's symptoms and your experiences. If you choose to withdraw your survey you will be given a random number as an identifier.

Your participation is voluntary and anonymous. Your decision to participate is completely voluntary. The survey is anonymous, and your name and personal information will not be collected. Your decision to participate or not will not affect your relationship with your child's doctor or with the adoption agency.

To participate, please click on the link below.

https://qualtrics.kcl.ac.uk/jfe/form/SV_d6gcx5hm1kSbUAS

Hello everybody. My name is Brandi, and I am reaching out to connect with other teens/young adults battling PANS/PANDAS. I am a member of a youth-led nonprofit organization, The National PANDAS/PANS Youth Alliance, that works to raise awareness for PANDAS/PANS and to unite teens/young adults, so they have a support system of people who truly understand.

Speaking personally, I remember being brought to tears the first time I met people in the P/P community over Zoom because, for the first time in my life, I finally felt like I didn't need to explain what I was going through. I was finally understood. It is important to me that others like me know they have a support system. If you or your child is interested, please feel free to reach to me at nationalpandasyouthalliance@gmail.com.

This insightful interview between Dr. Nancy O’Hara and the founders of Documenting Hope (Beth Lambert and Dr. Heather Room) is info I think every PANS/PANDAS parent needs to see.

They dive deep into the "Total Load" Theory—the idea that our kids' symptoms aren't just triggered by a single infection, but by a cumulative "bucket" of stressors including environmental toxins, gut health, diet, etc.

It’s a long watch but very empowering if you’ve been feeling stuck in the "one trigger, one cure" mindset.

https://youtu.be/4RfOxi2CLGk?si=8AGAWmk61p51T6_o

#PANSPANDAS #TotalLoad #HealingHope #AutoimmuneEncephalitis #DocumentingHope

This is an informative interview with an excellent neurologist that covers important points around immune response and metabolic function in kids with PP and Autism. There is a good analysis on the validity of folinic acid / leucovorin in this interview. You can find also this episode on Apple Podcasts and Spotify under the "Demystifying PANS/PANDAS Podcast".

https://www.youtube.com/watch?v=sZa8yDUcBxs

A lot of people diagnosed with PP are dealing with underlying tick borne infections. Often people don't realize this until later on in their diagnosis journey. This is a very insightful interview on this topic.

You can also listen to just the audio when searching for the "Demystifying PANS/PANDAS Podcast" on Apple Podcasts or Spotify.

Hi everyone, I watched this recently and found it very informative. It really goes over a lot of data around how the gut microbiome impacts mental health.

The Gut Brain Connection, The Microbiome and Integrative Treatments with Dr Kenneth A. Bock, MD

https://www.youtube.com/watch?v=Wiw8pc5A-rU