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A bright coral background with the heading: PANS FACTS, followed by the text: Myth #1. There isn't evidence PANS/PANDAS is real.  The truth: Experts from Stanford, Georgetown, Harvard, Yale, Columbia, and NIMH have been successfully researching and treating children with PANS for years. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A dark blue background with the heading: PANS FACTS, followed by the text: Myth #2: My child's onset wasn't abrupt so it must not be PANS. The Truth: Stanford, a leader in research and treatment of PANS, reported in a 2015 JCAP article that only 40% of patients in their clinic at that time met abrupt onset criteria. Most of the experts we've interviewed (see our website for details) report individuals without an acute onset respond to treatment similarly to those with an acute onset. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A blue-green background with the heading: PANS FACTS, followed by the text: Myth #3. The tests were all negative so it couldn't be PANS. The Truth: PANS is strictly a clinical diagnosis. No labs can rule it in or out. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A black background with the heading: PANS FACTS, followed by the text: Myth #4. My loved one just has autism. The Truth: In  some individuals, symptoms of OCD, repetitive behaviors, anxiety, and regression can actually be due to PANS and respond to treatment. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A dark purple background with the heading: PANS FACTS, followed by the text: Myth #5. There is mental illness in our family so he just has bipolar like X. The Truth: There is increasing evidence that bipolar, schizophrenia, depression and other mental health issues may be immune mediated or result from inflammation. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A light blue background with the heading: PANS FACTS, followed by the text: Myth #6. My loved one doesn't have all the symptoms of PANS so it is something else. The Truth: Only three symptoms are required for diagnosis.  neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A light blue-gray background with the heading: PANS FACTS, followed by the text: Myth #7. Antibiotics and anti-inflammatories didn't help so it isn't PANS. The Truth: Some individuals will need IVIG, plasmapheresis, steroids, or even second line treatments. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A bright aqua background with the heading: PANS FACTS, followed by the text: Myth #8. My loved one doesn't fit criteria because he/she doesn't have OCD. The Truth: Many parents and doctors overlook symptoms of OCD such as intrusive and repetitive thoughts, hoarding, religious obsessions, etc. Google Yale Brown OCD for a complete list of obsessions and compulsions you may have overlooked or your child might be hiding. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
A navy blue background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 1. Think about how you'd feel if your mind was racing 24/7, hundreds of intrusive thoughts were popping into your head daily, and you were so anxious it felt like you were tied to railroad tracks with a train barreling toward you. Imagine also you lost your ability to write, draw, and do math and couldn't fall asleep at night. This is what many with PANS and PANDAS are dealing with for months and years at a time. Showing grace and love means everything to our families. What looks like a behavioral issue or permissive parenting is actually a very serious medical condition. Compassion and empathy make a huge difference! neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A gray background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 2. Many with PANS have severe immune responses to minor illnesses. What seems like just a cold or just a little sore throat can be catastrophic to a person with PANS/PANDAS, undoing tens of thousands of dollars in treatments overnight and causing immense and sometimes life-threatening suffering. If you're sick, please let us know so we can make the best choice for our family member or ourselves. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
An aqua background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 3. When we say PANS is hard, we mean it is really, really, really hard. We tend to downplay the reality of how difficult it is to protect our family member's privacy and their reputations, to avoid criticism from those who couldn't begin to comprehend how devastating this illness is, and to save ourselves and our loved ones from shame and embarrassment. Research shows that caregiver burden related to PANS is as high or higher than literally every other medical condition including those deemed devastating. We never share the full story with you. Trust that we need your kindness, validation, and encouragement desperately. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A red background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 4. Those with PANS are often exceptionally sensitive to being criticized and disciplined in front of others. During a flare, they have far less control of their impulses and actions than they normally would. Those of us parenting children with PANS/PANDAS may not swiftly address rudeness or misbehavior in front of you, but trust that manners and good behavior are very important to us. We are certainly addressing the behavior when we have a moment of privacy and they've had a second to cool off and become more receptive to teaching. The fact that you don't see it doesn't mean it isn't happening or we don't care. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A light cyan background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  5. It may seem like PANS parents need to lighten up. We're the food police, the germ police, and sometimes it even seems like the fun police. This isn't because we're uptight. Many individuals with PANS are extraordinarily sensitive and their illness can be dramatically worsened by factors others don't need to worry about. Please know our choices are well thought out and our goal is to keep our loved one comfortable in their own skin. Unless you've had your family member's health and happiness stolen from him or her in an instant, it is impossible to understand the devastation or how much we will sacrifice to prevent a flare. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A pink background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  6. We cancel last minute. We take forever to return your texts. We miss events that are important to you. And we are really, truly sorry. We are exhausted beyond description and so busy trying to keep our kids' heads above water while managing medical treatments, insurance companies, doctors, therapists, and teachers--most of whom we are also having to educate ourselves. Please be patient. It isn't that we don't care. We are doing what we must to survive. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
An orange background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  7. Some of our children manage to hold themselves together at school and for certain activities. Just as you can only hold your breath for so long, they can only suppress their symptoms for so long. This means their worst symptoms are often hidden from your view. This fact doesn't mean that they have a choice in the matter or that they aren't actually ill. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A bright coral background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 8. People who aren't heard tend to get louder. PANS families are often completely exasperated and at the end of their ropes and for good reason. The average person with PANS has racked up countless misdiagnoses, been dismissed by several doctors, and had to leave their home state to find proper care. The average PANS parent has been labeled hysterical, crazy, or worse. Paying out of pocket for very expensive treatments is a huge financial burden. Can you think of any other medical illness where this is the norm? neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A dark gray background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  9. I've lived through several years of civil war and three months of bombings in former Yugoslavia. The stress was nothing compared to PANS/PANDAS. - Mother to a child with PANS. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A bright purple background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  10. Many years ago, PANS was considered controversial and outdated resources by the uneducated still abound. Today research and clinical practice has moved ahead. Reputable resources for those wanting to learn more include: Journal of Child and Adolescent Psychopharmacology, September 2017, Volume 27, Issue 7 February 2015, Volume 25, Issue 1; Stanford PANS Clinic, med.stanford.edu/pans; National Institute of Mental Health www.nimh.nih.gov/health/publications/pandas. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A bright pink background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  11. PANS is largely an invisible illness. Those with PANS/PANDAS often look well despite huge battles raging within their brains and bodies. Comments like At least it isn't blank or He/she looks so healthy invalidate the truth that PANS can be an all-encompassing, life threatening illness that robs sufferers of almost everything. What can I do to support you? is much more helpful. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A light cyan background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  12. Those struggling with PANS/PANDAS aren't contagious and they still desperately want to be included. Though their symptoms can vary so much day to day that their ability to participate in activities and events is unpredictable, please keep inviting them. They've lost so much already. Meaningful relationships are more important now than ever. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A blue background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  13. Those with PANS/PANDAS need and deserve a cure, but while we wait for that, we are grateful for those in our lives who make each day a little easier by reaching out, listening without judgement, and lessening the burden and isolation PANS/PANDAS creates. Sometimes miracles are just good people with kind hearts. ~Author unknown. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A black background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  14. PANS is a traumatic and isolating experience for the entire family. It is almost impossible to communicate the depth of the trauma we've endured. Even if I could put it into words, I really couldn't--it is too horrible, too embarrassing, too humiliating for all of us. What makes it really hard is that you're so desperately in need of support, but you're too ashamed and scared to really share all the reasons your family needs to be lifted up. So you go it alone, and that too causes more scars and trauma. ~Parent of three children with PANS/PANDAS. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A sage green background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  15. We are exhausted. Our relationships are suffering. Those with PANS need some joy and distraction from their torment. The siblings without PANS need some of our attention focused on them. We need dinner dropped off, groceries picked up, a night out, someone to watch our kids while we take a walk, someone to just listen, someone to give us a hug, someone to tell us we are doing a good job. Regardless of what we tell ourselves or tell you, there is no human being who could withstand this illness and still be okay. We need that acknowledged. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A periwinkle background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 16. Unless I specifically ask you for help, please assume that I do not need your help with discipline. Please do not step in and give my child or me advice unless I request that of you. I can assure you that I've read more, watched more, and learned more on dealing with difficult behaviors than you can imagine. I've worked with therapists and doctors on how to address my child's behaviors. You are not witnessing permissive parenting. You're witnessing a carefully orchestrated plan to manage the needs of a child with an inflammatory brain condition that impacts behavior. Help from someone without training in inflammatory brain conditions is rarely helpful and can often escalate the situation. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A hunter green background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  17. Those with PANS/PANDAS are often bright, empathetic, intelligent, kind, funny, talented, and more. At times, brain inflammation hides that. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A light blue background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day  18. Though we know people mean well by making suggestions or comparisons, one of the best ways to show support is by asking us how we are really doing and being willing to actually listen. There is so much value in truly being heard. A simple, I'm so sorry you're going through this, means so much. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A lilac background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 19. I’m a double amputee from a motorcycle accident. I have more trauma dealing with PANS than my own accident. Neuroimune FB follower. neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A blue background with the heading: What families struggling with PANS/PANDAS want you to know, followed by the text: Day 20. Sometimes your circle decreases in size but increases in value. We are so grateful for those of you who have listened without judgement, asked meaningful questions, and stuck with us. Thank you! neuroimmune.org. The Neuroimmune logo of a tree with magenta fruit is in the lower right corner.
A smiling boy outside, holding a green, framed chalkboard with the following words: PANS in the Classroom: Helping to Educate the Educator. My handwriting, math skills, focus, and behavior may vary dramatically day to day. I need patience, understanding, and accommodations to be successful. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta berries is in the lower right corner.
The hands of a young child wearing an orange sweatshirt hold a framed chalkboard with the following words: PANS in the Classroom: Helping to Educate the Educator. Anxiety is often a debilitating issue for kids with PANS. Separation anxiety, social anxiety, test, and performance anxiety are common. Patience is critical. Forcing an anxious person to do something they're not regulated enough to do is counter-productive and can worsen anxiety long term. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta berries is in the lower right corner.
A middle-school aged boy standing in front of a chalk board with the following words: PANS in the Classroom, Helping to Educate the Educator. The fact I can hold myself together in certain situations but not others can be confusing but I have about as much control of my symptoms during a PANS flare as someone with a cold has over when they sneeze. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower left corner. Neuroimmune.org.
A young boy standing on a stool, writing the following words on a chalkboard: PANS in The Classroom, Helping to Educate the Educator. There are days I just will not be well enough to come to school. Trust my parents know me well enough to make this determination. Trust that they want what is best for me more than anyone in the world. If I miss school because of symptoms, it is because I really need to be home. Judgement and doubt adds to the already extremely significant stress we are experiencing. neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the lower right corner.
Little boy holding a chalkboard with the following words: PANS in the Classroom: Helping to Educate the Educator. PANS is no longer controversial despite what outdated resources may say. Children with PANS have been successfully treated at Stanford, Harvard (Mass Gen), Yale, Georgetown, Columbia and many other excellent medical institutions for years now. Learn more: neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in the upper right corner.
Little girl sticking her tongue out and holding a chalkboard with the words: PANS in the Classroom, Helping to Educate the Educator. The behavioral problems seen in children with PANS are manifestations of medical illness that are beyond a child's control. Reward systems usually fail because the child really does not have the ability to control the behavior. Loss of privileges in PANS equates to punishing a child for being sick. To learn how to use a neurobehavioral approach, visit: neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta fruit is in upper right corner.
A smiling boy pointing to the words on a chalkboard: PANS in the Classroom, Helping to Educate the Educator. I am kind, fun, smart, and creative. There will be times when intrusive thoughts, anxiety, compulsions, tics, and other symptoms mask all those traits. I need you to show me that you believe I am a good kid who is having a hard time even on tough days. Neuroimmune Foundation tree logo and neuroimmune.org.
A young girl holding a pointer and standing in front of a chalkboard with the following words: PANS in the Classroom: Helping to Educate the Educator. Peer relationships may be a real struggle for me especially if my flares involve behavioral problems, social anxiety, or lashing out at others. You can help by facilitating an environment where kindness and inclusion are taught and valued. Please talk to my parents or to me if I am old enough to see if we are open to helping educate the class on PANS. neuroimmune.org. Neuroimmune Foundation logo of a tree with pink fruit.
While outside on a sunny day, a young girl holds a chalk board with the following words: PANS in the Classroom Helping to Educate the Educator. Your understanding of PANS and your attitude about it has the power to make or break my year. Because PANS is invisible, it is easy to forget that it is a very serious brain based illness. Please remember on the most challenging days how much I hate these symptoms and how much I wish I didn't have to struggle this way too. Neuroimmune Foundation logo of a tree with magenta fruit.
A young boy writing on a chalkboard the following text: PANS in the Classroom Helping to Educate the Educator Research from top experts at Stanford has found that caregiver burden in families of children with PANS is excessively high and equivalent to diseases deemed to be devastating. Several parents of children who have had both cancer as well as PANS have stated PANS was far more difficult for their families and a PANS parent who lived through civil war shared that PANS was more difficult for her. You can help alleviate some of this burden by being a true partner to help the child be successful in school. This starts with valuing the parent's input on what the child really needs and what strategies are a good fit. neuroimmune.org; Logo of tree with pink fruit.
The heading: If multiple diagnoses in the same person don't quite make sense... appears above a clinician holding a white board with the list: Anxiety disorder, Tourette syndrome, Anorexia, Oppositional defiant disorder, Mood disorder, Early onset bipolar disorder, Borderline personality disorder, Depression, Obsessive compulsive disorder, Conduct disorder, Attention deficit disorder. The heading: ...one uniting diagnosis might.
A heading appears above an list of symptoms, with cartoon illustrations of each: PANS is a clinical diagnosis requiring OCD and/or restrictive food intake, as well as two or more of the following symptoms: emotional lability, aggression, depression, irritability, deterioration in schoolwork, oppositional behaviors, urinary frequency, anxiety, sleep disturbances, regression, sensory abnormalities, and enuresis. neuroimmune.org.
A sad boy looking downward, with the following heading: Understanding PANS and PANDAS *not all individuals have all symptoms. The sub-heading: What it looks like is followed by the list: Rituals, Inflexible, Loss of control, Aggression, Screaming, Moody, Oppositional. The sub-heading: How they fee is followed by the list: Driven by OCD, Consumed with anxiety, Cannot control behavior, Scared, Exhausted, Ashamed, Desperate for normalcy. The Neuroimmune Foundation logo of a tree with magenta fruit is at the bottom of the graphic with the text: PANS is an inflammatory brain disorder that presents with symptoms and behaviors that are largely beyond a patient's control. neuroimmune.org.
A boy with his head in his hands, sitting cross-legged, with the following heading: Understanding PANS and PANDAS *not all individuals have all symptoms. The sub-heading What it looks like is followed by the list Rituals, Inflexible, Loss of control, Aggression, Screaming, Moody, Oppositional. The sub-heading How they feel is followed by the list Driven by OCD, Consumed with anxiety, Cannot control behavior, Scared, Exhausted, Ashamed, Desperate for normalcy. The Neuroimmune Foundation logo of a tree with magenta fruit is at the bottom of the graphic with the text, PANS must be addressed as a medical condition and not as a behavioral problem. neuroimmune.org.
A sad looking girl with her arms crossed. The following text appears on a gray background,: PANS/PANDAS Might Make Me: Afraid of things I used to enjoy, Say things I don't mean, Do things I regret, Struggle to regulate my emotions, Feel uncomfortable in my own skin, Cry over minor things, Have involuntary movements, Obsess over strange things, Lose drawing, writing, math skills, Not want to eat, Throw tantrums , Be very oppositional. Please be patient with me. Learn more: neuroimmune.org. The Neuroimmune Foundation logo of a tree with magenta berries is in the lower right corner.
A blue header on a white background reading OCD: It's not just hand washing; below, are magenta bullets with the following white text on a blue background: Intrusive thoughts, complusion to complete same action repeatedly, rigidity or obsession with sameness, need to confess, ask, or tell, fear of harming self or others, repetitive speech, questions, counting, fear of wrongdoing, compulsively lining things up, hoarding, religious obessions, rituals around food. Magenta text at the bottom reads Could it be PANS? Neuroimmune.org (logo with tree).
A light blue gray background with the Neuroimmune Foundation logo of a tree with magenta fruit and the following text: How to Show Support to Families Facing PANS/PANDAS. Instead of.... Have you tried punishing him? Maybe you should take a parenting class. So I read on Wikipedia...She looks so healthy! My kids do that sometimes too. Try...I am here to listen. What can I do to help? What is a good resource for learning more? How can I best explain PANS to my kids? I admire how hard you're working to help him. Is there a way we can include her? How can I support you?