• What is PANDAS? What is PANS?

    PANDAS is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.
     

    PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.

     

    Kentucky PANDAS/PANS Support (KPPS) is dedicated to increasing Awareness, providing Support, and advancing the Understanding of the medical conditions PANDAS and PANS. We provide resources for Families and Caregivers, Physicians and other Medical Care Providers, and Educators. By furthering the community's knowledge of this medical condition, we can help our children receive  quicker PANDAS/PANS diagnoses, receive appropriate treatments, and make faster recoveries. Much of our focus is on the Families dealing with PANDAS/PANS, but we also have medical and educational outreach efforts.

     

     

    FAMILIES

    Families and Caregvers: find info on diagnosing, treating, and caring for your PANDAS/PANS children

    (Click "FAMILIES" in Menu)

    PHYSICIANS

    Physicians and Medical Workers: find published journal articles, web sites, and more info about PANDAS/PANS.

    (Click "PHYSICIANS" in Menu)

    EDUCATORS

    Educators and Youth Instructors: find ways to support their PANDAS/PANS kids while they are in your care.

    (click "EDUCATORS" in Menu)

  • What is PANDAS? What is PANS?

    Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)

     

    Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

    What Is PANDAS?

    Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

    PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.
     

    PANDAS is the sudden onset of OCD often displayed as severe anxiety and emotional disturbances plus 2 OR MORE of the following symptoms: tics or other abnormal movements; severe separation anxiety, generalized anxiety; irritability, emotional lability, aggression, personality changes; ADHD, inability to concentrate; sensory sensitivities; deterioration in learning abilities and school performance; developmental and age regression (inc. deterioration in handwriting); sleep and night time difficulties; and/or urinary frequency or daytime/night-time secondary enuresis.

     

    The onset of symptoms are corresponding to an infection, usually strep. PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis.

    PANDAS is actually a form of PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders), with Group A Streptoccocus as the trigger. PANDAS falls under the umbrella term PANS.

    What is PANS?

    Pediatric Acute-onset Neuropsychiatric Syndrome

    PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.
     

    PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) is a new classification introduced in the 2012 paper "From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS". PANS is broader than PANDAS and PITAND as it includes not only disorders associated with a preceding infection, but also acute-onset non-infectious triggers, such as environmental and metabolic. No treatment plan for this syndrome has been defined at this time, but treatment plans similar to PANDAS should be attempted.

     

    The 3 criteria for PANS are: abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake; concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset; and symptoms are not better explained by a known neurologic or medical disorder.

    PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders) with "Other Microbes" is similar to PANDAS in terms of presentation. However, it consists of a broader list of possible triggers, not only strep. Other Microbe PITANDS triggers may include Mycoplasma Pneumonia, Mono, Lyme, viruses, and more.

    PANDAS/PANS Symptoms

    Symptom presentation and severity may be different from child to child. It can also vary in each PANDAS/PANS exacerbation or flare, which may get worse over time. During Treatment, the child's issues may wax and wane. Below is a list of possible PANDAS/PANS symptoms a child may exhibit. Not all symptoms need to be present, and not all possibilities are listed.

    • Obsessive Compulsive Disorder (OCD)
    • Tics (Motor and/or Vocal)
    • Severe Separation Anxiety
    • Generalized Anxiety
    • Obsessive Thinking
    • Inappropriate Thoughts
    • Specific Compulsions/Rituals
    • Perfectionism
    • Irritability
    • Emotional Lability
    • Aggression
    • Personality Changes
    • ADHD
    • Inability to Concentrate
    • Poor Impulse Control
    • Sensory Processing Issues
    • Oppositional Behavior/ODD
    • Deterioration in Learning Abilities
    • Decline in School Performance
    • Memory Problems
    • Loss of Math Skills/Dyscalculia
    • Handwriting Issues/Dysgraphia
    • Loss of Creative/Art Skills
    • Change in Gait
    • Age Regression
    • Sleep Difficulties
    • Urinary Frequency
    • Rages
    • Tantrums
    • Anorexia
    • Dilated Pupils
    • Restricted Eating/Anorexia
    • Limited Menu
    • Fear of Choking
    • School Refusal
    • Fight or Flight Response
    • Rigid Thinking
    • Executive Function Problems
    • Urinary Issues (Frequency, Bedwetting, Etc...)

    Diagnosis and Treatment Options

    There is no PANDAS/PANS Test. The condition is a clinical diagnosis based on symptoms and ruling other conditions out as a cause for the neurologic disturbances. It may be helpful to run the following tests:

    • Strep throat swab with a 48-72 hour culture
    • Blood work to test for strep (ASO, Anti-DNase B, and Streptozymes)
    • Tests to check for other infections (Mycoplasma Pneumonia (IgM and IgG), Lyme, Epstein Barr Virus/Mono, Influenza, Etc....)
    • The Cunningham Panel from Moleculera Labs can help identify the level of certain antibodies.

    There is no universal treatment plan for PANDAS or PANS since the condition will present differently in affected children. Various bacterial and viral infections may need to be addressed along with other issues that need to be treated.

     

    The main treatment options for both PANDAS and PANS include antibiotics, IVIG (Intravenous Immunoglogulin), steroids, and anti-inflammatory medications. Additionally, anti-virals, immune support, certain supplements and other treatments or therapies may be recommended. Recovery may wax and wane with relapses of symptoms and behaviors during infections or exposures to illnesses and other immune system triggering issues.

    With correct diagnosis and appropriate treatment, recovery/remission is possible!

    For more PANDAS/PANS information, visit the National Institute of Mental Health and PANDAS Physicians Network. You may also contact Kentucky PANDAS/PANS Support. Thank you!

  • Families

    PANDAS/PANS can be a confusing and scary diagnosis.

    Dear Families,

    You are not alone. 

    As a Parent or other Caregiver, you may be trying to determine if your child has PANDAS/PANS or you may just received a diagnosis. Your son or daughter has possibly undergone some extreme changes with OCD, tics, and/or eating issues overtaking their lives. Add in other symptoms like anxiety, separation fears, age regression, ADHD, sleeping issues, irritability, acedemic declines, and more, and your family is very likely much affected. KPPS will help you try to understand this medical condition and assist you in getting help for your PANDAS/PANS child.

     

    PANDAS/PANS can be isolating for families. The children have various symptoms that may keep them at home or limit the time they are willing to go out in public. KPPS provides support by making sure that the affected parents/caregivers have an outlet to communicate with other PANDAS/PANS families. Online support groups and in-person meetings help Moms, Dads, and other Caregivers know that they are not alone. (Kentucky Families, please contact us at "info@kypandaspans.org" for Support Group details.)

     

    This page provides links to web sites, blogs, forums, articles, and more resources that will be helpful during your PANDAS/PANS journey. With this information, you can learn how to best care for and recover your PANDAS/PANS child.

     

    Check back frequently for updates. If you have any questions, please contact KPPS. Thank you!

    PANDAS/PANS Resources for Families

    You have PANDAS/PANS questions and need answers. 

    These Resources have been chosen by Kentucky PANDAS/PANS Support especially for Families and Caregivers. You may wish to explore our Physicians and Educators Seciong too. (Kentucky Families, please contact us at "info@kypandaspans.org" for Support Group details.)

    PANDAS Sucks - Blog

    A personal blog that details what PANDAS is really like. It also serves to tell the collective story of families dealing with PANDAS/PANS. There is also the Your Words Series that allows Parents and Caregivers and others to tell their PANDAS/PANS stories about in their own words. Parents can also submit their reasons as to why they think PANDAS Sucks to be published on the blog. (Note: PANDAS Sucks is the KPPS Director's personal blog.)

    National Institute of MENTAL Health - NIMH

    This site provides general PANDAS/PANS information, background on the disorder, and diagnosis/treatment information.

    PANDAS/PANS Advocacy & Support

    PANDAS/PANS Advocacy & Support/PAS is non-profit organization that is focused on building public awareness of Pediatric Autoimmune Neuropsychiatric Disorders and providing support to families struggling with the medical, educational, social-emotional, and financial hardships of these disorders. The group distributes grants to families twice per year.

    PANDAS Network

    This organization is dedicated to improving the diagnosis and treatment of kids with PANDAS/PANS. Many parents turn to PANDAS Network for the latest in PANDAS/PANS news and updates. 

    Association for Comprehensive NeuroTherapy 

    The Association for Comprehensive NeuroTherapy (ACN) is dedicated to exploring advanced and alternative therapies for neurological disorders. Latitudes is a free info forum with many topics, ,including  PANDAS/PANS.

    StrepMonster

    This site is a great gateway to various PANDAS/PANS resources, including web sites, podcasts, videos, and more. It also includes a compelling poster campaign that shows what a Monster Strep can be.

    Helpful Books/Movies

  • PHYSICIANS

    Physicians and Medical Care Providers, Thank You for learning more about PANDAS/PANS!
     

    Whether you are a pediatrician, family practitioner, psychiatrist, nurse, therapist, specialist, or other medical care provider, you need to know about PANDAS/PANS. Your patients count on you to provide an accurate diagnosis and appropriate treatment plan. PANDAS/PANS creates an explosion of various symptoms in a child. Some testing may help to distinguish some important markers, but PANDAS/PANS is a clinical diagnosis based on symptoms and ruling other conditions out as a cause for the neurologic disturbances.

     

    This page provides links to web sites, articles, published reports, and more resources that will be helpful for understanding PANDAS/PANS. With this information, you can learn how best help the PANDAS/PANS patients. It is key that you have a thorough understanding of the medical condition so you can recognize the symptoms, diagnose the condition, and provide appropriate treatment.

     

    Check back frequently for updates. If you have any questions, please contact KPPS. Thank you!

    These Resources have been chosen by Kentucky PANDAS/PANS Support especially for Physicians and Medical Care Providers .

     

    KEY PANDAS RESEARCH

    Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells article shows how auto-antibodies triggered by recurrent Strep A infections enter the brain via the nasal cavity versus directly breaching the blood-brain-barrier (BBB). See video explanation here.

    PANDAS Physicians Network

    www.pandasppn.org

    The PANDAS Physicians Network (“PPN”) is an organization that is dedicated to helping medical professionals better understand PANDAS/PANS through real-time information and networking

    National Institute of Mental Health

    www.nimh.nih.gov
    This site provides general PANDAS/PANS information, background on the disorder, and diagnosis/treatment information. Access information about the latest research trials and studies.

    Moleculera Labs

    www.moleculeralabs.com
    This group serves to provide scientific evidence for patients with neuropsychiatric disorders. This site gives an overview of the lab's Cunningham Panel testing. Access JCAP Journal special edition PANDAS/PANS articles here.

     

    WebPediatrics

    www.webpediatrics.com
    This site contains specific information about PANDAS from Dr. Miroslav Kovacevic, Pediatrician and PANDAS Specialist. Includes signs and symptoms, diagnostic criteria, treatment options, and case studies.

    International OCD Foundation

    www.ocdfoundation.org

    This organization offers practical information about OCD and PANDAS/PANS, which usually presents with a sudden onset versus the typical OCD condition.

  • EDUCATORS

    Your job is all about children, and some children have PANDAS/PANS.

    Dear EDUCATORS,

    Thank You for learning more about PANDAS/PANS!

    Whether you are a school teacher, school administrator, daycare worker, sports coach, preschool teacher, Sunday school teacher, babysitter, nanny, scout leader, music instructor, martial arts instructor, or any other adult that educates children, you will want to know more about PANDAS/PANS.

     

    This page provides links to web sites, articles, published reports, and more resources that will be helpful for understanding PANDAS/PANS. With this information, you can learn how best help the PANDAS/PANS child entrusted to your care. KPPS can help you understand PANDAS/PANS.

     

    Check back frequently for updates. If you have any questions, please contact KPPS. Thank you!

    PANDAS/PANS Resources for Educators

    Have questions about PANDAS/PANS in the school setting?

    These Resources have been chosen by Kentucky PANDAS/PANS Support especially for Educators and anyone dealing with child care, coaching, and teaching.

    PANDAS Sucks - Blog

    A personal blog that details what PANDAS is really like. It also serves to tell the collective story of families dealing with PANDAS/PANS. The blog's School Daze Series gives good information for teachers and parents. (Note: PANDAS Sucks is the KPPS Director's personal blog.)

    National Institute of MENTAL Health - NIMH

    This site provides general PANDAS/PANS information, background on the disorder, and diagnosis/treatment information.

    International OCD Foundation

    This organization offers practical information about OCD and PANDAS/PANS. There are resources regarding OCD in children and handling OCD at school.

    New England PANDAS/PANS Parents Association

    A group of parents living in the northeast that aspire to raise awareness of PANS/PANDAS in our community and beyond, to support the medical community that is supporting our children, and to look for ways to expand the medical care available in their region.
     

    PANDAS Network

    This organization is dedicated to improving the diagnosis and treatment of kids with PANDAS/PANS. They offer comprehensive information about the medical disorder, including a School Resources section.

    Helpful Books

  • About US

    Kentucky PANDAS/PANS Support provides information to aid in the awareness and understanding of PANDAS/PANS.

    Awareness. Support. Understanding.

    Kentucky PANDAS/PANS Support (KPPS) is dedicated to increasing Awareness, providing Support, and advancing the Understanding of the medical conditions PANDAS and PANS. We provide resources for Families and Caregivers, Physicians and other Medical Care Providers, and Educators. By furthering the community's knowledge of this medical condition, we can help our children receive quicker PANDAS/PANS diagnoses, receive appropriate treatments, and make faster recoveries. Much of our focus is on the Families dealing with PANDAS/PANS, but we also have medical and educational outreach efforts.

    PANDAS/PANS can be a confusing medical condition and is sometimes isolating for families. The children have various symptoms that may keep them at home or limit the time they are willing to go out in public. KPPS provides support by making sure that the affected parents/caregivers have outlets to communicate with other PANDAS/PANS families. Online support groups and in-person meetings help Moms, Dads, and other Caregivers know that they are not alone. (Kentucky Families, please contact us at "info@kypandaspans.org" for Support Group details.)

    KPPS is proud that through our efforts the Kentucky Governor has declared October 9th "PANDAS/PANS Awareness Day" for two years in a row (2014, 2015). Mayors in Lexington and Louisville and Springfield have also shown support with city proclamations. Our group has also donated PANDAS/PANS books to county library systems, given presentations to teachers, and works to maintain an Internet and social media presence.

    KPPS is happy to provide a PANDAS/PANS presentation for your group to help in the Understanding of this medical condition. We have given talks to various groups of educators and the public. We will custom design a talk based on your organization's specific needs.

    If you have any questions or wish to schedule a PANDAS/PANS presentation, please contact KPPS. Thank you!

    Who We Are

    Members of KPPS are mostly Mothers and Fathers of PANDAS/PANS children. We share information with other parents freely to help other families during the diagnosis, care, treatment, and recovery stages of the medical condition. We have members from all over the state of Kentucky traveling to other states for medical support because there are no known treating PANDAS/PANS doctors in the state of Kentucky.

     

    The KPPS Director, Sarah Jane Alleman, lives in Lexington and is a PANDAS Mom and Medical Advocate. Her son, Jesse, was diagnosed with PANDAS in 2010 after a strep throat infection at the end of 2009 set off his autoimmune reaction. Sarah also writes a blog called PANDAS Sucks, and she is active in the PANDAS/PANS Community with various projects and initiatives.

    Question: Why Is Your KPPS Logo Purple?

    In Kentucky, many folks root for the University of Kentucky or University of Louisville. KPPS strives to be as inclusive as possible, even on the controversial matter of Wildcats or Cardinals. A compromise was made in the coloring of the Kentucky PANDAS/PANS Support logo. By combining and then dividing the RGB color values of UK blue with U of L red, the Kentucky PANDAS/PANS Support Purple was born.

  • CONTACT US

    Have questions about PANDAS/PANS? Need help finding a health care provider? Want to schedule a PANDAS/PANS presentation for your group? Please send us a brief message, and we will get back to you as soon as possible.

     

    Thank you!

    Kentucky PANDAS/PANS Support (info@kypandaspans.org)

  • The KPPS Blog

    COMING SOON!

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