Upcoming Opportunities for Families with PANS and PANDAS Specialists
Stanford PANS Clinic Q&A with Dr. Jenny Frankovich
October 3, 2023. 4:00 pm PT, 5:00 pm MT, 6:00 pm CT, 7:00 pm ET
Join us for a one hour Q&A for parents with Dr. Jennifer Frankovich from the Stanford PANS Clinic hosted by Neuroimmune Foundation director, Anna Conkey. Parents may submit their question for Dr. Frankovich at the time of their Zoom registration via Zoom.
Dr. Frankovich is a rheumatologist. Please note that she can *only* answer general questions related to PANS and cannot answer child-specific questions.
Questions must be submitted via Zoom at the time of registration and will not be accepted via email.
Anna Conkey
Neuroimmune, Founder & Chair
Jennifer Frankovich, MD
Clinical Associate Professor, Stanford
Dr. Madeleine Cunningham Webinar Update on The Cunningham Panel and Related Research
Dr. Cunningham is Co-founder and Chief Scientific Officer of Moleculera Labs. She is the George Lynn Cross Research Professor and the Presbyterian Health Foundation Presidential Professor and Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center. Dr. Cunningham’s laboratory has studied molecular mimicry, autoimmunity and infection related to inflammatory heart disease for the past 30 years. She has pioneered the development of human mAbs in understanding the pathogenesis of human diseases. Currently her laboratory is focused on translational studies of human diseases, to improve their diagnosis and treatment and determine how infections play a role in autoimmune diseases of the heart and brain. Dr. Cunningham is the director of an NIAID supported Immunology Training Program at the University of Oklahoma for the past 10 years. She has been the recipient of NHLBI Career Development and MERIT Awards and has been funded by NIH for the past 25 years. She is author of over 100 publications in peer-reviewed journals and speaks internationally on the findings of her research.
Recorded: August 22, 2022
Neuropsychiatric Illness Associated with Lyme and Tick-borne Illnesses with Dr. Shannon Delaney
Dr. Delaney is a neuropsychiatrist at Columbia University Irving Medical Center who is codirector with Dr. Fallon of the Cohen Center for Health and Recovery from Lyme and Tickborne Diseases. She completed her NIH-sponsored research fellowship at Columbia University in 2017. Her clinical research has focused on immune and infectious contributions to psychiatric disease, especially psychosis in children and young adults. She specializes in seeing children and adults with complex neuropsychiatric presentations, especially those with suspected Lyme disease or other tickborne diseases, as well as those with Pediatric Acute onset Neuropsychiatric
Syndrome (PANS).
Recorded: August 9, 2022
Recognizing and Addressing Trauma in the Neuroimmune Parent Experience with therapist Eileen Devine
Research tells us unequivocally that when an individual experiences trauma, it takes a significant toll on their spiritual, emotional, and physical well-being. What happens then, to a parent who experiences repeated trauma as a result of parenting a child who lives with a neuroimmune illness and challenging behavioral symptoms? What can parents in this unique position do to protect against the impact of the trauma they endure while also parenting their child in the way they require? This webinar will discuss signs and symptoms of trauma as it relates to the parent experience. It will highlight relational stress, (leading to) compassion fatigue, (and then leading to) burnout so that parents can recognize when this is presents in their life and can take necessary support to address and heal from it. And finally, this webinar will outline the importance of nervous system health and stability and the small, but meaningful steps that can be taken each day to build resiliency and heal from the trauma endured.
Recorded: April 13, 2022
Dr. Cynthia Kapphahn, Disordered Eating in PANS
Cynthia Kapphahn, MD, MPH Medical Director, Eating Disorders Program Lucile Packard Children’s Hospital, Stanford Clinical Professor, Division of Adolescent Medicine Stanford University School of Medicine
Dr. Kapphahn is a Clinical Professor in the Division of Adolescent Medicine at Stanford University School of Medicine. She is Medical Director of Lucile Packard Children’s Hospital, Stanford’s, Eating Disorders Program, which specializes in the treatment of adolescents and young adults with eating disorders. She completed medical training at Yale Medical School, a pediatric residency at the Johns Hopkins Hospital, and an adolescent medicine fellowship at the University of California, San Francisco. She received a master’s degree in Public Health and Policy from Johns Hopkins University. In addition to her clinical and administrative responsibilities, she is involved in research regarding eating disorders, medical complications, and care outcomes, and has a special interest in Avoidant Restrictive Food Intake Disorder (ARFID). She is a member of the National Eating Disorders Quality Improvement Research Collaborative, and has served as Chairman of the Society for Adolescent Health and Medicine’s Eating Disorder Clinical Committee.
Learning Objectives: • Recognize that eating restriction is common in PANS/PANDAS • Identify the common reasons children and adolescents with PAN/PANDAS restrict intake List four factors associated with increased risk of medical instability from restricted intake in PANS/PANDAS the approach to managing eating issues in children and adolescents with PANS/PANDAS.
Understanding the Medications Used in PANS and PANDAS
Dr. Erica Guetzlaff is a pharmacist with 14 years of experience in a variety of settings, including retail, clinical and administrative (insurance) pharmacy. She has a PharmD from the University of Wisconsin-Madison, with clinical interests in autoimmune and inflammatory disease. Most importantly, she is a mom to two kids and has direct experience with PANS. She is dedicated to advocating for families affected by PANS and has perpetual hope that we will see a well-accepted, disease-specific treatment for this tragic condition in our lifetime.
This presentation will describe the basic pharmacology, cost and utility of the psychiatric medications commonly used in PANS. Psychiatric medications are, many times, a key component in PANS treatment, along with treatment of infection and reduction of neuroinflammation. The content will be presented at a level that is appropriate for parents and interested clinicians.
This live event was free to the public. The recording is available to members.
EMDR 101 for Families of Children and Young Adults with PANS/PANDAS/encephalitis
Caregiver burden has been shown in research to be exceptionally high in parents of children and young adults with PANS, PANDAS, and encephalitis. Join us for a one hour webinar with Therapist Tina Motley as she walks us through the science behind EMDR therapy. EMDR is often used successfully to treat PTSD, and there has been a newer publication showing positive results in PANS. This session is focused on use of EMDR in adults (not PANS patients) and geared towards parents who have experienced trauma and high levels of stress.
This live webinar was free to the public. The webinar recording is available to members.
Protecting Your Child: Legal Issues Arising for PANS/PANDAS Families and How to Advocate Without Increasing the Risk
Beth Alison Maloney is an attorney and the author of Saving Sammy: Curing the Boy Who Caught OCD and Childhood Interrupted: The Complete Guide to PANDAS and PANS. Her combined expertise in complex medical conditions and child protection law has led her to become involved in a number of high-profile court cases . Through the webinar—Protecting Your Child: Legal Issues Arising for PANS/PANDAS Families and How to Advocate Without Increasing the Risk—Ms. Maloney will educate and inform on how to reduce the likelihood of CPS involvement with your families, and what to do if it happens. www.BethAlisonMaloney.com
This live webinar was free to the public. The webinar recording is available to members.
Dr. James Adams Presents Overview of Microbiota Transplant for Autism Studies
James B. Adams, Ph.D., is the Director of the Autism/Asperger’s Research Program at Arizona State University. His research focuses on the medical causes of autism and how to treat and prevent it including the areas of nutrition (vitamins/minerals, essential fatty acids, carnitine, digestive enzymes, special diets), oxidative stress, gut problems, gut bacteria, toxic metals, and seizures. He has published over 150 peer-reviewed scientific articles, including over 40 related to autism. He is also the President of the Autism Society of Greater Phoenix, the President of the Autism Nutrition Research Center, the co-leader of the Scientific Advisory Committee of the Autism Research Institute, and chair of the Scientific Advisory Board of the Neurological Health Foundation. He has an adult daughter with autism.
Microbiota Transplant for Autism Webinar Objectives:
- Learn the treatment protocol used in our study of microbiota transplant
- Learn about the safety and efficacy of microbiota transplant
This live webinar was free to the public. The webinar recording is available to members.
Q&A for Families With Dr. Richard Frye
Recorded June 26, 2020. Join us for a one hour Q&A with Dr. Richard Frye hosted by Neuroimmune Foundation director, Anna Conkey. Dr. Frye is a pediatric neurologist with expertise in neurodevelopmental and neurometabolic disorders. This webinar is FREE for members and Dr. Frye will answer your questions about PANS, PANDAS, autism, autoimmune encephalopathy, autoimmune encephalitis and more.
This live webinar was free to the public. The webinar recording is available to members.
Disclaimer
The opinions expressed by the expert hosts should not be interpreted as medical advice pertaining to a specific child’s case, but rather simply reflect the experience of these expert clinicians in treating similar cases or encountering similar situations in the past. Each individual’s case is unique and the expert hosts do not have the ability to examine the child nor confirm the accuracy of the clinical information, thus cannot and will not make specific treatment recommendations on any child’s case but instead provide more general information based upon clinical experience.
The recordings by Eileen Devine below are free and accessible on demand.
Eileen is a therapist with a dozen years of clinical experience who works with parents of children with special healthcare needs. She is an instructor for the Post-Master’s Certificate in Adoption and Foster Family Therapy through Portland State University’s Child Welfare Partnership where she teaches other clinicians how to use the neurobehavioral model in their work with families. She also has the great fortune of facilitating dozens of other trainings and workshops for parents and clinicians each year on a variety of topics that are relevant to the experience of being a parent of a child with a neurobehavioral condition. In addition to this professional experience, Eileen has the lived experience of parenting a child with significant neurobehavioral challenges. Her goal is to support parents and caregivers of children with these frequently understood brain-based conditions on their unique parenting journey so that they, their children, and their family can thrive. Eileen has become a top therapist working with families of children exhibiting PANDAS symptoms. While PANS treatment and PANDAS treatment questions are best for our PANS medical specialists, Eileen is a pro at helping families navigate the confusing and challenging behavioral symptoms of inflammatory brain disorders. Eileen helps families navigate PANDAS symptoms in her webinars.
Recognizing and Addressing Trauma in the Neuroimmune Parent Experience
Research tells us unequivocally that when an individual experiences trauma, it takes a significant toll on their spiritual, emotional, and physical well-being. What happens then, to a parent who experiences repeated trauma as a result of parenting a child who lives with a neuroimmune illness and challenging behavioral symptoms? What can parents in this unique position do to protect against the impact of the trauma they endure while also parenting their child in the way they require? This webinar will discuss signs and symptoms of trauma as it relates to the parent experience. It will highlight relational stress, (leading to) compassion fatigue, (and then leading to) burnout so that parents can recognize when this is presents in their life and can take necessary support to address and heal from it. And finally, this webinar will outline the importance of nervous system health and stability and the small, but meaningful steps that can be taken each day to build resiliency and heal from the trauma endured.
Executive Function in Individuals With Neuroimmune Conditions
Parenting children with neuroimmune conditions is incredibly complex. This webinar encourages us to parent through a brain-based lens. Understand how our child’s unique brain function is directly connected to their challenging behaviors, allowing a new set of possibilities on how we can best support them begin to emerge.
Our Greatest Parenting Tool: Self Regulation
As a parent, our greatest and most effective tool is our ability to self-regulate. When we have the ability to regulate our own emotional state, we can then co-regulate with our child, helping them find calm and equilibrium when they are experiencing their own big emotions. Contrary to what many think, this is not simply a psychological or emotional process underway, but is one that resides deep within our nervous system and our child’s nervous system. In this webinar, we will talk about what is meant by self-regulation and co-regulation and why it is important for us to be cognizant of these two elements as parent. We will talk about how this might look different when parenting a child with a neuroimmune illness and strategies for increasing our ability to stay regulated when our child is in the midst of incredibly challenging behaviors. No matter how little or how much we know about this topic, there is always room to grow in our understanding of ourselves from this nervous system lens, so we hope you’ll join us for this important discussion. Recording available by registering to watch below. The password to watch this webinar is: I’mamember1.
Values, Behavior, and Our Emotional Response: Parenting Children With Neuroimmune Disorders with Therapist Eileen Devine
What happens when we are parenting a child with neurobehavioral challenges whose behaviors clash daily with our deeply held beliefs? How do we understand the source of those visceral, instantaneous reactions to behaviors we have as parents and respond to our child from a neurobehavioral perspective? Join us as we learn to recognize when our values are getting in the way of us parenting from a neurobehavioral, brain-based approach. Learn to slow down reactions to challenging behaviors, the role of grief and loss in the process, and how to use the neurobehavioral approach.
Managing The Toll of Caregiver Trauma and Building Resiliency in Families With Children With Special Healthcare Needs with Therapist Eileen Devine
Join us as we delve into the topics of relational stress, caregiver burnout, compassion fatigue and the impact on our physical and mental well-being, relationships, and family systems. This webinar led by therapist Eileen Devine will look at these topics through the unique lens of caring for a child with significant health challenges and how parents can take measurable and concrete steps to build resiliency within themselves and within our parenting partnerships.
Navigating the Dynamics of Sibling Relationships in Families of Children With Neuroimmune Disorders with Therapist Eileen Devine
When you have a child that requires constant supervision and care, howcan you balance this with the needs of your other children? How do you support your other children when they have experienced the trauma oftheir sibling’s meltdowns, rages, or hospitalizations? How do you help them understand the illness without feeling as if you are creating a double standard or excuses for unacceptable behavior? And how do you balance the needs of all your children when one of them requires everything you have to give? This webinar also features an extended Q&A.
Understanding and Applying a Brain Based Approach to Parenting Children With Neuroimmune Disorders with Therapist Eileen Devine
Join us as we learn how parents and caregivers can provide support for children with neuroimmune disorders from a neurobehavioral lens, the connection between brain function and (challenging) behavioral symptoms, how our values and beliefs factor into our ability to support from a neurobehavioral perspective, and how to create accommodations to reduce the behavioral symptoms and build a stronger connection in the process.
Back to School: Supporting Children With Neuroimmune Disorders in The Classroom With Therapist Eileen Devine
Steeped in neuroscience, yet easy to understand through a neurobehavioral lens, this webinar will clearly articulate why traditional classroom behavior management systems don’t work for children with neuroimmune disorders and what children can do instead. This webinar is for parents as well as teachers.
Advocating for Your Child in an Educational Setting
Shara Virlan, educator, reading specialist, and parent of a child with PANDAS presents on being an advocate for your child with a neuroimmune disorder, when and how to request a special education referral, the difference between an IEP and 504 plan, and accommodations and modifications that may be helpful for your child. (30 minutes. Free)
PANS/PANDAS In The Classroom: Information For Educators
Shara Virlan, educator, reading specialist, and parent of a child with PANDAS presents Information For Educators, a free 35 minute presentation for educators on working with children with PANS and PANDAS in the classroom.
