When Strep Hijacks Your Child's Brain: One Family's PANDAS Journey

PANS/PANDAS is usually diagnosed in young children, and it usually arrives with OCD or tics. Cat and Brandi's stories don't follow that script. Both were teenagers when symptoms took hold, both watched their bodies and personalities change in ways their doctors couldn't explain, and both spent years being told that what was happening to them wasn't real. In this episode of Flying Through Fog, Krystal and Angela talk with Cat and Brandi about what it's like to lose yourself and know it's happening. We get into what late onset changes about the experience, the particular damage done by a positive test that no one will act on, and the shame that settles in when you start believing the person you become in a flare is who you actually are. Cat and Brandi also talk about what helped, what they want from the people closest to them, and the friendship and advocacy work that grew out of all of it. RESOURCES: Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts Claimable https://www.getclaimable.com/ PANDAS Michiana https://pandasmichiana.com/ PANDAS Physician Network https://www.pandasppn.org/ PANDAS Network https://pandasnetwork.org/understanding-pandas/ Angela Henry, LCSW https://angelahenrylcsw.com/services/pandas-pans-ae National PANDAS/PANS Youth Alliance https://www.nationalpandasyouthalliance.org/home PANDAS PARENTS Facebook Group https://www.facebook.com/groups/461708653853619 ASPIRE PANS PANDAS Advocacy, Community & Support Aspire Neuroimmune Foundation Neuroimmune Foundation | Inflammatory Brain Conditions Mind Global Council https://www.mindglobalcouncil.com/ OCD Family Podcast https://www.ocdfamilypodcast.com/ Hornets and Hippos Workbook: https://margaretjessoppsyd.com/hornets-and-hippos/ Parenting Resources: Dr. Ross Greene https://drrossgreene.com/ Dr. Becky Kennedy https://www.goodinside.com/about/ Dr. Dan Siegel https://drdansiegel.com/ Brene Brown (professor and researcher of shame, vulnerability, courage and empathy) https://brenebrown.com/ See omnystudio.com/listener for privacy information.

The P in PANS/PANDAS stands for pediatric, and that single word shapes how patients get treated long after childhood. Meet Kirk, Emily and Lily from the National PANS/PANDAS Youth Alliance. They talk with us about what it's like to live with a condition most doctors still associate only with small children. Each of them were diagnosed as children, but they had different journeys and different experiences, which shows how vastly different each individual's experience with PANS or PANDAS truly is. Kirk, Emily and Lily talk about how differently PANS/PANDAS presents from person to person, how tick-borne infections play a role, and how relapse can arrive years after a treatment that seemed to work. They also talk about the National PANS/PANDAS Youth Alliance, how they advocate for themselves and other people living with PANS/PANDAS and what they're pushing for legislatively. RESOURCES: Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts National PANDAS/PANS Youth Alliance https://www.nationalpandasyouthalliance.org/home NPYA Advocacy Guidebook https://www.nationalpandasyouthalliance.org/store/p/how-to-advocate-a-youth-survivors-guide-to-panspandas-advocacy Donate To NPYA https://givebutter.com/Qz6f5s NPYA on Instagram https://www.instagram.com/pandasyouthalliance/ Emily on Instagram https://www.instagram.com/chronicallyem.pans/ Claimable https://www.getclaimable.com/ PANDAS Michiana https://pandasmichiana.com/ PANDAS Physician Network https://www.pandasppn.org/ PANDAS Network https://pandasnetwork.org/understanding-pandas/ Angela Henry, LCSW https://angelahenrylcsw.com/services/pandas-pans-ae PANDAS PARENTS Facebook Group https://www.facebook.com/groups/461708653853619 ASPIRE PANS PANDAS Advocacy, Community & Support Aspire Neuroimmune Foundation Neuroimmune Foundation | Inflammatory Brain Conditions Mind Global Council https://www.mindglobalcouncil.com/ OCD Family Podcast https://www.ocdfamilypodcast.com/ Hornets and Hippos Workbook: https://margaretjessoppsyd.com/hornets-and-hippos/ Parenting Resources: Dr. Ross Greene https://drrossgreene.com/ Dr. Becky Kennedy https://www.goodinside.com/about/ Dr. Dan Siegel https://drdansiegel.com/ Brene Brown (professor and researcher of shame, vulnerability, courage and empathy) https://brenebrown.com/ See omnystudio.com/listener for privacy information.

OCD and tics are two of the most common ways PANS/PANDAS shows up, and neither one tends to look the way parents expect. In this episode, teens Lynn and Brady describe what it actually felt like growing up with PANDAS: the fear of shiny objects, being called names by classmates who don't understand your tics and intrusive thoughts that convinced them something was deeply wrong with who they were. This conversation gets into why so much of what PANS/PANDAS kids experience stays hidden for years. Kids assume their intrusive thoughts mean something about them, so they don't tell anyone, and parents read their behavior as ordinary anxiety. This episode covers the difference between anxiety and OCD, why curiosity works better than problem solving, the shame that keeps kids silent, and the single reframe that helps the most: if a thought horrifies you, that's evidence it isn't you. This episode includes discussion of intrusive thoughts, including sexual and harm-themed OCD, and bullying. RESOURCES: Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts Claimable https://www.getclaimable.com/ PANDAS Michiana https://pandasmichiana.com/ PANDAS Physician Network https://www.pandasppn.org/ PANDAS Network https://pandasnetwork.org/understanding-pandas/ Angela Henry, LCSW https://angelahenrylcsw.com/services/pandas-pans-ae National PANDAS/PANS Youth Alliance https://www.nationalpandasyouthalliance.org/home PANDAS PARENTS Facebook Group https://www.facebook.com/groups/461708653853619 ASPIRE PANS PANDAS Advocacy, Community & Support Aspire Neuroimmune Foundation Neuroimmune Foundation | Inflammatory Brain Conditions Mind Global Council https://www.mindglobalcouncil.com/ OCD Family Podcast https://www.ocdfamilypodcast.com/ Hornets and Hippos Workbook: https://margaretjessoppsyd.com/hornets-and-hippos/ Parenting Resources: Dr. Ross Greene https://drrossgreene.com/ Dr. Becky Kennedy https://www.goodinside.com/about/ Dr. Dan Siegel https://drdansiegel.com/ Brene Brown (professor and researcher of shame, vulnerability, courage and empathy) https://brenebrown.com/ See omnystudio.com/listener for privacy information.

Autism and PANS/PANDAS share enough symptoms that separating them can be nearly impossible. In this episode, meet Madi, a 15-year-old freshman and horseback rider who can tell you exactly what her favorite horse will do for a handful of feed. She also experiences both autism and PANDAS. It wasn't until after IVIG that she could start to tell which symptoms belonged to which diagnosis. Flying Through Fog hosts Krystal Vivian, Lindsey Forsyth and Angela Henry talk with Madi and her mom, Mindy, about what a flare feels like from the inside, how OCD had her convinced she was a bad person (though she's lovely), and what symptoms stayed behind after PANDAS treatment. Madi is honest about the intrusive thoughts she experienced and how nobody told her that the struggle simply wouldn't end after IVIG. Mindy talks about watching for the same patterns in her other children and how hormones, not just infection, can set off a flare. This important episode includes discussion of self-injury and intrusive thoughts of harm. RESOURCES: Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts Claimable https://www.getclaimable.com/ PANDAS Michiana https://pandasmichiana.com/ PANDAS Physician Network https://www.pandasppn.org/ PANDAS Network https://pandasnetwork.org/understanding-pandas/ Angela Henry, LCSW https://angelahenrylcsw.com/services/pandas-pans-ae National PANDAS/PANS Youth Alliance https://www.nationalpandasyouthalliance.org/home PANDAS PARENTS Facebook Group https://www.facebook.com/groups/461708653853619 ASPIRE PANS PANDAS Advocacy, Community & Support Aspire Neuroimmune Foundation Neuroimmune Foundation | Inflammatory Brain Conditions Mind Global Council https://www.mindglobalcouncil.com/ OCD Family Podcast https://www.ocdfamilypodcast.com/ Hornets and Hippos Workbook: https://margaretjessoppsyd.com/hornets-and-hippos/ Parenting Resources: Dr. Ross Greene https://drrossgreene.com/ Dr. Becky Kennedy https://www.goodinside.com/about/ Dr. Dan Siegel https://drdansiegel.com/ Brene Brown (professor and researcher of shame, vulnerability, courage and empathy) https://brenebrown.com/ See omnystudio.com/listener for privacy information.

What is it like to have PANDAS in college? Abby is a freshman in Minnesota, twelve hours from home, playing Division II volleyball and working toward vet school. She's also managing a PANS/PANDAS diagnosis she didn't receive until her junior year of high school, which meant most of her life was spent coping without a name for what was happening to her. Your Flying Through Fog hosts Krystal Vivian, Lindsey Forsyth, and Angela Henry talk with Abby about what a flare actually looks like for her, which is quiet and solitary rather than the raging many parents expect. She walks through the two flares she had during her first semester away, deciding whether to tell her coach and her teammates, and which part of her treatment has helped her most. She also answers the question a lot of parents of newly diagnosed kids are afraid to ask out loud: what does this look like when my child is grown? This is our first episode of season 2 of Flying Through Fog. We're so glad you're flying with us. RESOURCES: Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts Claimable https://www.getclaimable.com/ PANDAS Michiana https://pandasmichiana.com/ PANDAS Physician Network https://www.pandasppn.org/ PANDAS Network https://pandasnetwork.org/understanding-pandas/ Angela Henry, LCSW https://angelahenrylcsw.com/services/pandas-pans-ae National PANDAS/PANS Youth Alliance https://www.nationalpandasyouthalliance.org/home PANDAS PARENTS Facebook Group https://www.facebook.com/groups/461708653853619 ASPIRE PANS PANDAS Advocacy, Community & Support Aspire Neuroimmune Foundation Neuroimmune Foundation | Inflammatory Brain Conditions Mind Global Council https://www.mindglobalcouncil.com/ OCD Family Podcast https://www.ocdfamilypodcast.com/ Hornets and Hippos Workbook: https://margaretjessoppsyd.com/hornets-and-hippos/ Parenting Resources: Dr. Ross Greene https://drrossgreene.com/ Dr. Becky Kennedy https://www.goodinside.com/about/ Dr. Dan Siegel https://drdansiegel.com/ Brene Brown (professor and researcher of shame, vulnerability, courage and empathy) https://brenebrown.com/ See omnystudio.com/listener for privacy information.