Family Advocacy: Your October Media Stories

Featured Your Story NewsOctober was a busy month for awareness, education, and research. We are happy with the number of families that agreed to open their hearts and homes and share their experience with various news outlets. Below is a “round up” of those stories that made a great impact this month. Thank you.


LIVING WITH PANDAS

New York Family
“Pediatricians should do a simple screening if there are abrupt onset symptoms,” says Dr. Eric Hollander, clinical professor of psychiatry and behavioral sciences at the Albert Einstein College of Medicine and director of the Autism and Obsessive Compulsive Spectrum Program at Montefiore Medical Center and Albert Einstein. “If PANDAS isn’t on their radar, and they aren’t screening, the lack of treatment could lead to more clinical, academic and social consequences.” MORE


BRAIN ATTACK

StanMed (Stanford)
On March 2, 2009, something snapped inside Paul Michael Nelson. In the middle of the night, his parents found the 7-year-old boy stabbing the door of the family’s home office with a kitchen knife, trying to get at a computer that was off-limits after his bedtime. When they stopped him, he flopped around the floor on his knees, barking like a dog. He tore at blankets with his teeth and spoke in gibberish. MORE


PANDAS Awareness Day: Fighting for recognition of misunderstood syndrome connected to strep

silive.com
Days and months dedicated to the awareness of health and illness are so plentiful, their effectiveness may be diluted. But if ever a condition needs to be on the calendar of causes, PANDAS-PANS Awareness does. MORE


Pandas: A little-known disorder with a large impact

The Irish Times
“Two years ago, Ethan started rolling his eyes up and backwards and, soon after, began clenching his fingers and bending his arms. We were told to ignore it and hopefully it would go away,” says Karen.

“One year later his tics had progressed to full body bends and crunching which hampered his walking and he could no longer drink out of a normal cup as he continually spilled. He developed irrational fears, displaying pure terror at things that hadn’t bothered him in the past. He cried easily and had many tantrums.

“He also started wetting his bed and we found ourselves walking on eggshells around him for fear of saying the wrong thing to set him off,” his mother says. “He asked us to help make him better as he wished ‘things would go back to normal’.” MORE


PANDAS: A Puzzling Illness in Children

Quality Health
Multiple visits to four different pediatricians didn’t shed any light on this sudden and bizarre change in behavior. The doctors speculated on a range of possibilities, including allergies, a neurological disorder called Tourette Syndrome, and OCD, and wanted to put Andrew on anti-tic medication.

However, Pam and her husband resisted, believing that there had to be a logical explanation for why their son’s personality and health suddenly declined overnight. “This was a very scary and lonely time,” Pam admits. “Many people didn’t understand what was happening to our son and we barely had a enough information to understand it ourselves, let alone explain it,” she adds. In desperation, she began doing her own research and reached out to a local support group for parents of kids who had similar symptoms. MORE

Press Release for Consensus Statement

The following press release was issued by Mary Ann Liebert, Inc. publishers.

“This is a watershed moment in our thinking about PANS..For too long confusion and a lack of understanding concerning this syndrome have left severely impaired children with few, if any, treatment options. This effort promises an improvement in the quality of care and we are grateful to be able support it and to publish our special issue on the topic.” -Harold S. Koplewicz, MD, Editor-in-Chief of the Journal of Child and Adolescent Psychopharmacology and President of the Child Mind Institute in New York

JCAP CoverNew Rochelle, NY, October 22, 2014-A panel of leading clinicians and researchers across various general and specialty pediatric fields developed a consensus statement recommending how to evaluate youngsters in whom neuropsychiatric symptoms suddenly develop, including the abrupt, dramatic onset of obsessive-compulsive disorder (OCD). This difficult diagnosis is typically made by pediatricians or other primary care clinicians and child psychiatrists, who will benefit from the guidance provided in the recommendations published in Journal of Child and Adolescent Psychopharmacology, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article, part of a forthcoming special issue on PANS/PANDAS, is available free on the Journal of Child and Adolescent Psychopharmacology website until November 22, 2014.

Representing the PANS Collaborative Consortium, Kiki Chang, MD, Stanford University School of Medicine (Stanford, CA) and coauthors describe the goals of the First PANS Consensus Conference, from which the expert panel derived its recommendations: to clarify the diagnostic boundaries of PANS, to develop systematic strategies for evaluation of suspected PANS cases, and to set forth the most urgently needed studies in the field. Most cases of PANS appear to be triggered by an infection, and most often an upper respiratory infection.

In the article “Clinical Evaluation of Youth with Pediatric Acute Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference,” the authors detail the core components of a thorough diagnostic evaluation, including family history, medical history, physical examination, psychiatric and mental status exam, laboratory studies, and an infectious disease evaluation.

“This is a watershed moment in our thinking about PANS,” says Harold S. Koplewicz, MD, Editor-in-Chief of the Journal of Child and Adolescent Psychopharmacology and President of the Child Mind Institute in New York. “For too long confusion and a lack of understanding concerning this syndrome have left severely impaired children with few, if any, treatment options. This effort promises an improvement in the quality of care and we are grateful to be able support it and to publish our special issue on the topic.” 

To access the full release, please visit:
http://www.liebertpub.com/global/pressrelease/expert-recommendations-for-diagnosing-pediatric-acute-onset-neuropsychiatric-syndrome-pans/1546/

New JCAP Research Papers on PANS

New research articles published provide ” a watershed moment in our thinking about PANS”, according to Harold S. Koplewicz, MD, Editor-in-Chief of the Journal of Child and Adolescent Psychopharmacology.

Mary Ann Liebert, Inc. publishers and the Journal of Child and Adolescent Psychopharmacology are pleased to provide complimentary 2-week access, beginning today, to these important PANDAS/PANS articles.

Research papers include:

We encourage you to  download and print a copy.Just click on FULL TEXT PDF to access it. Just click on FULL TEXT PDF to access it.

More research papers will follow and purchase of the entire Journal will be available soon from JCAP at a discounted rate for parents and physicians.

Research Report: Post-Infectious Autoimmune Disorders

The medical journal, Brain Research, features the Research Report Post-infectious autoimmune disorders: Sydenham’s chorea, PANDAS and beyond by Dr. Kyle William and Dr. Susan Swedo.

The purpose of this research report is to “present the clinical aspects of both disorders, the data for potential shared etiopathogenesis between them, and the evidence for the therapeutic use of immunomodulatory therapies for the symptoms of SC and PANDAS.”

Highlights:

  • Describe the clinical features of Sydenham’s chorea and PANDAS.
  • Describe the hypothesized pathophysiological mechanisms for both SC and PANDAS.
  • Review the data suggesting a benefit for immunomodulatory therapies in of SC and PANDAS.

Only the abstract is available for free. Find it at http://www.sciencedirect.com/science/article/pii/S0006899314013444.

PANS Consensus Paper Now Online!

JCAP CoverThe Journal of Child and Adolescent Psychopharmacology has released an online copy of the PANS diagnostic guidelines as agreed upon at a May 2013 Consensus meeting! The paper is entitled Clinical Evaluation of Youth with Pediatric Acute Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference.

Authors are:
Chang K, Frankovich J, Cooperstock M, Cunningham M, Latimer ME, Murphy TK, Pasternack M, Thienemann M, Williams K, Walter J, Swedo SE.

This is the first of many papers that will be published. A hard copy, published version will accompany a series of papers in January or February 2015. PANDAS Network is working with the publisher, Mary Ann Liebert, to make the published version available to parents at a discounted rate. That information will be available later this week.

Abstract

On May 23 and 24, 2013, the First PANS Consensus Conference was convened at Stanford University, calling together a geographically diverse group of clinicians and researchers from complementary fields of pediatrics: General and developmental pediatrics, infectious diseases, immunology, rheumatology, neurology, and child psychiatry. Participants were academicians with clinical and research interests in pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) in youth, and the larger category of pediatric acute-onset neuropsychiatric syndrome (PANS). The goals were to clarify the diagnostic boundaries of PANS, to develop systematic strategies for evaluation of suspected PANS cases, and to set forth the most urgently needed studies in this field. Presented here is a consensus statement proposing recommendations for the diagnostic evaluation of youth presenting with PANS.

To view the abstract and obtain directions on how to access the online pdf,  please visit http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0084. Again, a hard copy will be available for purchase in January or February 2015.


PANDAS NETWORK COMMENTARY

This is an exciting read and promises to promote increased treatment internationally.  It gives exhaustive step-by-step instructions for practitioners and explains both the PANDAS and PANS definition — emphasizing the potential, life altering severity if left untreated.   Evaluation guidelines include in-depth evaluation of the following: family history of mental, and autoimmune illness; physical findings that include presentation of skin, eyes, nose, throat, chest, neck, muscular, neurological findings and more. Blood workups are discussed as well as the usefulness of the Cunningham Panel™.

Infectious disease evaluations include persistent infections such as strep, mycoplasma pneumonia, ebstein barr, influenze, lyme and more. Guidelines to differentiate between autoimmune encephalitis and PANDAS-PANS are given. The Consortium advises evaluation of both immunodeficiency, MRI’s and lumbar puncture in particular – narrowly outlined situations.

May this serve to force the hands of insurers to cover, follow and the next paper must discuss how to HEAL the children!!

Announcing a New Support Group!

Welcome to our newest support group, located right on the state line of Kansas and Missouri! This new support group will be called the “Kansas City Metro PANS/PANDAS Group.” If you are in this area and would like more information, please contact Kristen at: kcareapandas@gmail.com

Thank You for a Great Awareness Day!

YOU made a great impact during the week leading up to PANDAS/PANS Awareness Day. We (as a community) did an amazing job with outreach.

AwarenessDayFinal

  • Our facebook posts reached nearly 90,000 people.
  • Our most popular Awareness Day post was shared 357 times.
  • Our facebook page is quickly approaching 4,000 people.
  • PANDAS Network website traffic was the highest it is has ever been.
  • 35 states requested proclamations.
  • 44 events and fundraiser were created

Simple actions make a difference. YOU MAKE A DIFFERENCE. Thank you!


AWARENESS DAY 2014

Mia Pumpkin Patch Fundraiser

Mia Pumpkin Patch

CO Pumpkins for PANDAS

CO Pumpkins Patch

 

 

 

 

 

 

 

 

 


EVENTS STILL TO COME

There are a few events still taking place in October and November! To see if there is an event near you, please visit:

pandasnetwork.org/2014-awareness-day-events

Needed: Videos for Documentary

Video Request open source via flickr words addedA university professor has been working on a documentary film concerning PANDAS. Quite a few parents have stepped up and been brave enough to share video of their son or daughter’s condition in an effort to raise awareness and educate the general public and medical community. If your son or daughter is currently experiencing PANDAS flairs and you would be willing to share video from these episodes, please email tsorel@jou.ufl.edu.

PANDAS Network has met with this documentarian and is in communication with him.  Thank you to those that chose to participate. You are helping bring our stories to life so others can understand what our children and families experience.

Omaha, NE to Host Event on 10/18/14

NE EventOn Oct. 18, a group of doctors from all over the United States and a parent who has a child with PANS/PANDAS will be discussing PANDAS/PANS in the Midwest PANS/PANDAS Patient Support Group meeting.

“The event will provide a platform for parents and their children to hear from expert physicians about this rare disease, and share their stories with others living with PANS/PANDAS on a daily basis,” says Abbie Cornett, patient advocate for IG Living. “For many mothers and fathers, it will be the first opportunity they have to meet another parent dealing with the struggles of PANS/PANDAS.”

The patient support group meeting will feature several medical professionals with PANS/PANDAS expertise:

  • Roger Kobayashi, MD, will provide a medial overview of PANS/PANDAS.
  • Kevin Lusk, MD, will discuss treating PANS patients.
  • Winslow Borkowski, MD, looks at the neurological movement disorders with PANS.
  • W. Harrington, MD, will provide an overview of the psychiatric and behavioral features of PANS.
  • Kristie Bittner, RN, will share her personal experience with having a child with PANS.

EVENT DETAILS

The Midwest PANS/PANDAS Patient Support Group meeting is being held on Saturday, Oct. 18 at the Omaha Marriott Regency, 10220 Regency Circle, Omaha, Neb., from 9 a.m.-12:30 p.m. Supervised entertainment will be provided for any children attending the conference with their parents. Patients and their families are also invited to spend the afternoon at the Omaha Zoo following the meeting’s adjournment.

Interested attendees are asked to RSVP before Oct. 15 to Jennifer@allergynebraska.com or call 402-391-1800. You can also visit igiveforkids.com for more information.

The meeting is being planned by I Give For Kids, which is a partner of IG Living magazine, a division of FFF Enterprises. I Give For Kids, Allergy Asthma Immunology and Boys Town National Research Hospital proudly support this PANS/PANDAS event.


EVENT FLYER:

Midwest_PANS_PANDAS_meeting_invitation

ALERT! Special Edition PANDAS/PANS Journal Published!

Journal of Child and Adolescent Psychopharmacology:
Special Edition on PANDAS/PANS

JCAP CoverWe are pleased to announce the Journal of Child and Adolescent Psychopharmacology (JCAP) will publish a Special Edition on PANDAS/PANS in January/February 2015. Also, beginning in November, online articles will be gradually published. This important journal is used by practitioners in Psychiatry, Neurology, Pediatrics and Neuroscience.

A consortium of PANDAS/PANS experts have written papers on the investigation, treatment, basic science and recommendations to be made to the medical community. PANDAS/PANS Diagnostic Evaluation Guidelines will be available to be utilized by agencies such as the American Academy of Pediatrics.

PARENTS and CONCERNED PHYSICIANS…THANK YOU!   Your brave efforts working with our children have made this happen!

This journal is a first step in advancing identification and treatment. Most importantly, it has created a united voice that ends the debate about the existence of PANDAS/PANS and eases the stigma of healing our children.

For an idea of a few of the topics to be covered, look at the AACAP 61st Annual Meeting scheduled on October 20-25 in San Diego, CA. Information of this meeting can be found here. PANDAS Network is proud to be a literature table exhibitor, contributing informational material at this event.


THE CRUCIAL IMPLICATION of the New PANDAS/PANS Diagnostic Guidelines

PANDAS Awareness MagnetThe PANDAS/PANS Diagnostic Guidelines can be used by medical professionals to track and treat PANDAS/PANS children in years to come. Immediate treatment of our children will make a sizable dent in the reported $247 billion spent annually on children’s mental health issues affecting 13-15% of the U.S.’s 75 million children. For a look at the CDC report “Mental Health Surveillance Among Children -United States, 2005-2011″, CLICK HERE.

In May 2013, the Centers for Disease Control issued this:
“…first report to describe the number of U.S. children aged 3-17 years who have specific mental disorders, compiling information from different data sources covering the period 2005-2011… It provides information on childhood mental disorders where there is recent or ongoing monitoring. These include ADHD, disruptive behavioral disorders such as oppositional defiant disorder and conduct disorder, autism spectrum disorders, mood and anxiety disorders including depression, substance use disorders, and Tourette syndrome.”

“Know the Symptoms, Change the Outcome” , the PANDAS Network motto, will truly have meaning in millions of children’s lives……..very soon.