Columbus, OH Support Group Meeting 12/4

Support FeaturedLive in or near Columbus, Ohio? Come join other parents and caregivers for support. Not much is better than talking to others that understand and can relate!

WHEN: Thursday, December 4th  at 7pm

WHERE: Colin’s Coffee (3714 Riverside Dr., Columbus, OH 43221)

QUESTIONS? Contact this support group coordinator at uamamabear@gmail.com.


PLAN NOW FOR OUR NEXT MEETING!

After the December meeting, the group will meet Thursday, February 5th, same location and same time. Mark your calendar now!

Separation Anxiety in PANS: A Case Study

77% of PANS children exhibit symptoms of a Separation Anxiety Disorder (T.Murphy et al 2014). The case study by Drs. Navkhare and Kalra, The curious case of the “inseparable child”, highlights “the importance of considering the differential diagnosis of autoimmune neuropsychiatric manifestation of streptococcal infection in a child who develops sudden onset behavioral change including symptoms of separation anxiety or school refusal.”

In this study, “a 10-year-old male child was brought by his parents with a 1-month history of irritability, restlessness, and increased anxiety on separation from parents. These symptoms were abrupt in onset, with the child suddenly refusing to play with his sister and other children in his neighborhood. He began asking his parents to be around him and cried if they did not listen. He insisted that his parents and siblings did not move away from him even for a minute to the point of not allowing them to go to another room. Within 2 days, the behavior increased to such an extent, that he would cry at the thought of separation from his parents and siblings.”

According to the study, “He was started on oral cefixime (100 mg bid) with oral acetaminophen (40 mg/kg) for 10 days. On follow-up after 10 days, parents reported complete remission of his symptoms within 5 days of starting medications.”

To read the case study The curious case of the “inseparable child” from the Indian Journal of Psychiatry by Drs. Navkhare and Kalra, visit http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181186/.

A “Must Listen” Radio Interview with Dr. Susan Swedo

New Jersey Magic 98.3’s Maggie Glynn interviews Dr. Susan Swedo in this 30 minute, information packed radio spot. This is definitely an item worth listening to and sharing!

You can listen to it below or visit the show’s page directly at http://www.magic983.com/maggie-glynn.aspx.

Show 002

PANDAS/PANS affects as many as 1 in 200 children. Maggie interviews Dr. Susan Swedo, Senior Investigator & Chief Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health and the national expert on PANDAS/PANS.

Posted 10/12/2014 7:30:00 AM


HIGHLIGHTS

Below is not a verbatim transcript. To listen to show in its entirety, visit Maggie Glynn – Magic 98.3 Show 2 at www.magic983.com/maggie-glynn.aspx.

The October 2014 interview touched on many of the usual, but needed, topics such as an overview of PANDAS and PANS, diagnosing, treating, history, research, etc.  It also discussed some items that are not often mentioned. Below are some the of the highlighted topics we wish to share.

  • A clue of PANDAS is urinary problems. Approximately 50% of children present with some sort of urinary symptom.
  • At this point, we now know more about PANDAS than we do about SC (Sydenham Chorea) and the neurological manifestations that may occur with RF (Rheumatic Fever).
  • PANDAS is not a response to the infection. It is a post-infection occurrence. It can happen at time of infection or several weeks/months after the infection was present.
  • PANDAS doesn’t always happen with the child’s first strep infection.  PANDAS can occur with any strep infection.  It depends what the strep bacteria has on its cell wall and the child’s immune response.
  • PANDAS is a combination of genetic vulnerability and an exuberant response to strep.
  • More children have PANDAS than we realize. PANDAS is not extremely rare.
  • 8 out of 12 PANDAS children who were diagnosed as having strep and were given timely, appropriate treatment with antibiotics, had a resolution of their symptoms.
  • Providers with specific questions about what steps to take for the patients can email the NIH at OCDresearch@mail.nih.gov.
  • Future research at the NIMH will focus on acute onset with eating disorders.

 

 

 

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

New Support Group for North & South Carolina!

We are so thrilled to be able to announce our newest support group, PANDAS/PANS of the Carolinas!

Their first meeting will be December 1st, 7:15pm, at AAIR of Charlotte – Elizabeth Location.

Allergy, Asthma & Immunology Relief

1523 Elizabeth Ave. Ste. 200
Charlotte, NC  28204

Please email: pandasofthecarolinas@gmail.com for additional information.

Thank you!

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.

This Consensus Statement, along with other newly published research papers, 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 and President of the Child Mind Institute in New York. See full press release here.

 

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