Why A Correct Diagnosis Can Be Life-Changing

Sad Girl FeaturedA FOUR YEAR OLD should not be admitted to a psychiatric facility after a sudden onset of symptoms surface without first looking into possible strep or other infections. Thank goodness the JCAP helped the Nichols family find some of the answers they needed!

Read Advocating for your child when doctors doubt the diagnosis to learn how the Nichols family almost lost their young son to a misdiagnosis when in actuality it was an undiagnosed, asymptomatic strep infection triggering PANDAS.

Advocating for your child when doctors doubt the diagnosis
http://www.phillyvoice.com/pandas-disorder/

JCAP PANS Special Issue Published!

The JCAP Special Edition online is the first collection of research papers on PANDAS/PANS written by a Consortium of researchers and physicians. It is pivotal to the advancement of treatment and research for this subset of children.

This long awaited publication explains how “understanding PANS may help us understand not just how to better diagnose and treat youth with this syndrome but other youth with developmental neuropsychiatric syndromes and potentially the pathogenesis of psychiatric disorders as a whole.

The studies have abstracts available for view. The articles can be purchased individually, may be available through a medical library, University or Hospital affiliation.

ts-foundation-alertIf you are having difficulty receiving help, diagnosis, or treatment, the Consensus Statement, written by a Consortium or researchers and physicians, is an item worth investing in and presenting to your physician.

Your donation dollars are helping PANDAS Network bring this research to the frontline by allowing us to purchase 300 copies of this Special Edition JCAP to be sent to doctors both in the United States and internationally. Thank you for being our partner in these endeavors!!!


CONTENT


FIRST PAGE

Mary Ann Liebert has made the first page available for free.

 

 

 

Entire JCAP FREE Online Until 3/15 Only!

Cover for Journal of Child and Adolescent PsychopharmacologyThrough March 15th only, you can download every article in the special edition JCAP!

Download them NOW! Articles include papers on IVIG, Plasmapheresis, and more. These tools can be useful at medical appointments and insurance purposes.

Click here for the full list:
http://online.liebertpub.com/toc/cap/25/1

Research Highlights Positive Treatments & More

JCAP CoverPositive treatment outcomes and more are the focus of the new research posted online for the highly anticipated Journal of Child and Adolescent Psychopharmacology special edition!

The online pieces are available as abstract only and will accompany  previously released online articles , including the groundbreaking Consensus Paper. If you ordered the Special Edition JCAP, you will receive the full versions in your copy once it is published in late February.

ts-awesome-arrow-circle-o-rightTherapeutic Plasma Apheresis as a Treatment for 35 Severely Ill Children and Adolescents with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (Latimer, et al) – According to the provided abstract, therapeutic plasma apheresis (TPA), provided positive results to children experiencing a PANDAS exacerbation. Abstract: http://bit.ly/1DctFKg

ts-awesome-arrow-circle-o-rightCytokine Correlations in Youth with Tic Disorders (Parker-Athill, et al) - According to the provided abstract, “cytokine dysregulation (plays a role) in the pathogenesis of tic disorders”. Cytokines are important in health and disease, specifically in host responses to infection, immune responses, inflammation… (ref 1). Abstract: http://bit.ly/1DctO0h

ts-awesome-arrow-circle-o-rightUse of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (Kovacevic et al) - The case report of 12 youths with PANDAS treated with IVIG, provide new information about the short-term benefits of IVIG therapy, and are the first descriptions of long-term outcome for PANDAS patients. Abstract: http://bit.ly/1Dx3RZD

ts-awesome-arrow-circle-o-rightAntineuronal Antibodies in a Heterogeneous Group of Youth and Young Adults with Tics and Obsessive-Compulsive Disorder (Cox et al) – According to the abstract, immunological profiles for children with OCD and/or tics suggested that “youth and young adults with chronic tics and OCD may have underlying infectious/immunologic etiology.” Abstract: http://bit.ly/1KABkEv


PREVIOUSLY PUBLISHED ARTICLES

The following are previously released articles that will also appear in the upcoming Special Edition JCAP.

JAMA: Tonsillectomy in PANDAS Treatment

JAMA Otolaryngology FeaturedJAMA, Journal of the American Medical Association, Otolaryngology–Head & Neck Surgery recently published the Case Report “The Role of Tonsillectomy in the Treatment of Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS)” by Drs. Demesh, Virbalas, and Bent.

This Case Report “reported symptom improvement in comparison with treatment with antibiotics alone, including those with no response to antibiotics” and “four of the 9 had complete resolution (of PANDAS symptoms) after tonsillectomy”.

Only the abstract is available for free and can be read at:
http://archotol.jamanetwork.com/article.aspx?articleid=2089440


Currently, tonsillectomies are not a standard form of treatment for PANDAS children. There have been mixed reviews both in the medical community and within the parent community. Some have seen marked improvement with PANDAS symptoms and a lowering in the number of strep infections. Others have shared that the tonsillectomy did not help and symptoms temporarily worsened post surgery.

If a tonsillectomy is considered by an experienced ENT, parent feedback has suggested a treatment course of antibiotics prior to surgery and antibiotics post surgery. Requesting the tonsils be biopsied post surgery may also show whether strep, staph, or other bacteria was hiding in the tonsillar crypts.

Additional research on this topic is in development. Tonsil and Adenoid Analysis conducted by Drs. Beth Latimer, Neurology and Earl Harley, ENT (Georgetown University) will include a research paper on autoimmune cell findings found in some PANDAS/PANS children’s tissues. Expected publication in 2015.

Other Relevant Research:
PANDAS Syndrome: a new tonsillectomy indication? (2008)
Tonsillectomies and Adenoidectomies Do Not Prevent the Onset of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Group A Streptococcus (2013)

Dr. Swedo Univ. of AZ Grand Rounds Streamed LIVE on 12/11

The University of Arizona Medical Center will be hosting Dr. Susan Swedo of the National Institute of Mental Health at a Special Pediatric Grand Rounds on Thursday, December 11 from 12-1 pm MST.

“Dr. Swedo will review the scientific and clinical data linking GAS (Group A streptococcal bacteria) to OCD and other neuropsychiatric symptoms in PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). Diagnostic guidelines for PANDAS & PANS will be presented, along with suggestions for management of children in the acute and semiacute phases of illness.”

VIEW THIS PRESENTATION LIVE!

This presentation will be available via live stream by visiting http://streaming.biocom.arizona.edu/home/.

To read the full announcement, visit the University of Arizona Medical Center website.


UPDATE 12/12/2014

View archived video at https://streaming.biocom.arizona.edu/event/?id=25600&play=1&format=sd

 

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 by clicking on the arrow.

Show

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 [email protected]
  • Future research at the NIMH will focus on acute onset with eating disorders.

 

 

 

PANS Consensus Paper Now Online!

JCAP Cover

The 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.

To view the abstract,  please visit http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0084.

This is the first of many papers that will be published.


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!!

The PANDAS Controversy: Why (and How) Is It Still Unsettled?

Murphy2014Dr. Tanya Murphy has published multiple papers on PANDAS and PANS, including review articles that lay out the history and most updated information regarding these disorders. The last summary was completed in 2010’s The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus,and Related Disorders:A Way Forward.

Over the course of the last four years, a good portion of information has remained consistent, however, growing research has also emerged along with the addition of PANS.  We welcome this new summary and review.

 

The PANDAS Controversy: Why (and How) Is It Still Unsettled?

In August 2014’s Current Developmental Disorders Reports, Drs. Tanya Murphy, Diana Gerardi, and E. Carla Parker-Athill address the most updated information on PANDAS and PANDAS in “The PANDAS Controversy: Why (and How) Is It Still Unsettled?”.

However, one should note that at time of submission, other important works may not have been available for citation and reference, such as Dr. Chugani’s work that shows Neuroinflammation Varies Between PANDAS & TS.

We are excited  that the entire paper is available for FREE.

 

 

Highlights and Overview

Below are some highlights we have pulled as we know time is sometimes scarce with PANDAS/PANS families and providers. When you are able, please take the time to read the paper in its entirety.

The evolution and broadening of the PANDAS diagnosis and definition:
This section discusses the broadened criteria of PANS that de-emphasizes the etiology (or possible infectious cause) of the onset of symptoms. It discusses the lack of guidance in addressing how one should treat the spectrum of symptoms and severity that may be associated with a PANS presentation.

Updated PANDAS overview:
This section discusses the symptomatology, strep association, and the role of family history. Dr. Murphy et. al. highlights how PANDAS varies from “classic OCD” due to its possible accompanying symptoms such as ADHD and separation anxiety along with its acute onset.

A table in included that shows the most noted symptoms associated with PANDAS and the percentage of children experiencing those symptoms in three separate studies. The closeness to the percentages reaffirms the possible symptom presentation.

PANDAS etiology:
Etiology:the cause, set of causes, or manner of causation of a disease or condition.
This section discussed the symptoms onset and/or worsening of symptoms in correlation to strep and other infections.The paper states that even though there are findings that support these correlations, there are parties that still insist there is no correlation. Even though these parties claim the lack of correlation, “youth with tics or OCD had been found to have more GAS infections per year than healthy controls [24•, 28]. In addition, an increase in the incidence of tics has been reported as occurring in temporal proximity to an outbreak of streptococcus in a pediatric clinic [30]. PANDAS symptom severity and recurrence of episodes has also been correlated with the number of past GAS infections [10]. Notably, patients with OCD or tics have been more likely than healthy controls to have had a GAS infection within the three months prior to onset of symptoms [8].”

This section also reaffirms that other infections, not only strep, can incite the original exacerbation and subsequent exacerbations. Also, that “asymptomatic carriers of GAS must also be considered, as up to 20 % of school-aged children are asymptomatic GAS carriers, and 25 % of family members of a child with GAS are actually asymptomatic carriers [34].”

Research:
This section discusses the growing list mouse models that have shown the correlation between strep and the onset of symptoms and autoimmunity.

Treatment:
This section touches on the use of antibiotics, tonsillectomies, IVIG, and PEX.

 

Thank you to Drs. Tanya Murphy, Diana Gerardi, and E. Carla Parker-Athill for providing the medial and general community this resource.
The PANDAS Controversy: Why (and How) Is It Still Unsettled? (2014)