Resources for Kids, Teens & Young Adults with PANS/PANDAS
Living with PANS/PANDAS can impact school, friendships, activities, and family life. Managing appointments, treatments, symptoms, and explaining the condition to others can also be challenging.
This page provides resources for children, teens, and young adults with PANS/PANDAS, as well as for siblings and friends seeking to better understand and support their loved ones.
Understanding PANS/PANDAS
Understanding PANS and PANDAS: For Kids and Teens Who Have PANS/PANDAS
ASPIRE developed this resource for kids, teens, and young adults with PANS/PANDAS. It explains the conditions, common symptoms, why flares can make things more difficult, and key information for young people living with PANS/PANDAS.
Understanding PANS and PANDAS: For Kids and Teens Who Have PANS/PANDAS
Understanding PANS and PANDAS: For Friends and Siblings
PANS/PANDAS affects not only the individual but also their siblings and friends. They may have questions or struggle to understand changes in behavior, increased need for support, missed school, or reduced participation in activities.
This ASPIRE resource helps friends and siblings understand PANS/PANDAS and provides guidance on how to support someone living with the condition.
Understanding PANS and PANDAS: For Friends and Siblings
Connect With Others
ASPIRE Adult Patient ChitChat | Ages 18+
ASPIRE’s Adult Patient ChitChat is a free peer support group for adults with PANS/PANDAS. These informal meetings offer opportunities to connect with others who share similar experiences.
Adult Patient ChitChat is open to participants age 18 and older. It is not a therapy group and does not offer medical or legal advice.
Learn more about ASPIRE Adult Patient ChitChat
PANS Courage | Teens & Young Adults
PANS Courage is a youth-led organization that offers virtual support groups for teens and young adults with PANS/PANDAS. PANS Courage operates independently and is not affiliated with ASPIRE. Individuals under 18 should consult a parent or guardian before joining any external online group.
PANS Courage on Facebook and PANS Courage on Instagram
National PANDAS/PANS Youth Alliance
The National PANDAS/PANS Youth Alliance (NPYA) is a youth-led organization dedicated to raising awareness, promoting acceptance, advancing advocacy and legislation, and connecting young people affected by PANS/PANDAS. NPYA empowers young people to advocate, share experiences, connect with peers, and participate in efforts to improve awareness and access to care.
Visit the National PANDAS/PANS Youth Alliance
Living With PANS/PANDAS
Treatment Fatigue in PANS Children, Teens, and Young Adults
Living with PANS/PANDAS often involves years of appointments, medications, treatments, missed experiences, flares, setbacks, and ongoing discussions about symptoms.
Treatment fatigue refers to the physical, mental, and emotional exhaustion that can result from managing these challenges over an extended period.
Treatment Fatigue in PANS Children, Teens, and Young Adults
Understanding PANS/PANDAS: Insights from Those Who Live It
ASPIRE invited students and young adults with PANS/PANDAS to share what they wish their friends understood. Their responses provide insight into managing symptoms that may not be visible to others.
Understanding PANS/PANDAS: Insights from Those Who Live It
Bullying & PANS/PANDAS
Children and teens with PANS/PANDAS may have symptoms or require accommodations that peers do not understand. This resource addresses bullying, its impact, and strategies for families and schools to respond.
Navigating College Accommodations for Students with PANS/PANDAS
Students preparing for or attending college may face challenges from PANS/PANDAS symptoms that require accommodations and support. This resource outlines how to navigate these needs in a college environment.
Navigating College Accommodations for Students with PANS/PANDAS
Resources for Siblings
PANS/PANDAS impacts the entire family, including siblings. They may face changes in routines, concerns about their sibling, questions about symptoms, or difficulty managing their own needs while attention is focused on the child who is ill. ASPIRE offers several resources focused on the sibling experience:
- The Sibling Experience in PANS/PANDAS: Understanding the Challenges & Needs
- Sibling Support
- Therapy for Siblings of Children with PANS PANDAS
- Understanding PANS and PANDAS: For Friends and Siblings
- Always My Brother: A Resource for Siblings of Children with PANS, PANDAS, Lyme, Bartonella, ASD, Autism Regression and Autoimmune Encephalitis
Books for Kids & Teens
Books can help children and teens understand PANS/PANDAS, articulate their experiences, relate to others, learn about a sibling’s illness, and develop strategies for managing symptoms like OCD and anxiety.
- Lyla and Pickles’ Guide to PANDAS
- Super Sam and the Battle Against PANS/PANDAS
- Let’s Talk About PANS PANDAS What It Is & How to Live With It: A Guide For Parents and Kids
- My Story About PANS/PANDAS
- A Child’s Introduction to Understanding PANDAS
- PANS / PANDAS Strength – Hope – Understanding: A Picture Book for Children, Family, & Educators
- In A Pickle Over PANDAS
- Pendulum – Middle Grade Novel on PANS PANDAS
- The First Rule of Climate Club
- Mylie’s Lyme Story
- Always My Brother: A Resource for Siblings of Children with PANS, PANDAS, Lyme, Bartonella, ASD, Autism Regression and Autoimmune Encephalitis
- Crushing OCD Workbook for Kids: 50 Fun Activities to Overcome OCD With CBT and Exposures
- Standing Up to OCD Workbook For Kids: 40 Activities to Help Children Stop Unwanted Thoughts, Control Compulsive Behaviors, and Overcome Anxiety
- What to Do When Your Brain Gets Stuck: A Kid’s Guide to Overcoming OCD
- What to Do When You Worry Too Much: A Kid’s Guide to Overcoming Anxiety
- Outsmarting Worry: An Older Kid’s Guide to Managing Anxiety
- The OCD Workbook for Teens: Mindfulness and CBT Skills to Help You Overcome Unwanted Thoughts and Compulsions
Browse all Children’s Books on ASPIRE
A Note About Outside Resources
ASPIRE provides information about external organizations and resources that may benefit children, teens, young adults, and their families. Inclusion does not imply endorsement of any organization, individual, treatment, or medical recommendation. Parents and guardians are encouraged to review external groups, social media communities, and online resources before allowing children under 18 to participate.
Gabriella True
