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 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.

 

 

 

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 and obtain directions on how to access the online pdf,  please visit http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0084.

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.  You can pre-order a copy of the JCAP at a discounted rate until December 15, 2014. Click here to learn how to order.

 


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)

New PANS Article in Naturopathic Doctor News & Review

NDNRThe April 2014 issue of NDNR highlights the very well written, multi-page article by Dr. Steven Rondeau, ND, BCIA-EEG, “Elucidating PANDAS Follow-Up Discussion of an immune-Mediated Mental illness”.

Dr. Rondeau touches on a variety of aspects of the disorders, including history and the Catch 22 of diagnosing and treatment. As he states, “Part of the challenge of working with neuroimmune conditions like PANS is that the outcome of the treatment is often what verifies or provides the diagnosis.”

Dr. Rondeaus’s specialty is Naturopathic Medicine. Many assume Naturopathic physicians do not believe in antibiotics or the treatment protocols used in Western Medicine. But Dr. Rondeau’s article explains the importance and success in using antibiotics, steroids, IVIG, etc. – if the need is indicated.

To read the article in full, visit http://www.wholeness.com/media/Rondeau_April_2014.pdf.

Who Inspires a PANDAS Researcher?

So who inspired one of the most influential people in the PANDAS research community to become a researcher? Read Bio Matters: A father’s love of science sparked research career for OU professor and find out why Dr. Madeleine Cunningham began her decades long career studying strep, Rheumatic Fever, and now PANDAS.

Dr Madeleine Cunningham
When Madeleine Cunningham was a child growing up in Mississippi, her father drove her through the Southern forests and explained his work as a botanist and forestry expert.

“He used to show me all of his experiments with trees,” Cunningham said. “He would talk about their genetics. He just had a great interest in science.”

That love of science was transferred from father to daughter.

 

Read the entire article at http://newsok.com/bio-matters-a-fathers-love-of-science-sparked-research-career-for-ou-professor/article/4888862/?page=1.

Bipolar News Discusses Dr. Kiki Chang and PANS

PandasNetworkBipolar Network News May article, “PANS: Sudden OCD or Restrictive Eating Disorder Onset Following an Infection” focuses on Dr. Kiki Chang and his 2014 meeting of the International Society for Bipolar Disorder presentation.

This article  includes the “sometimes forgotten” primary PANS symptom of severe restrictive eating. It also gives an insight into the patient population at the Stanford PANS Clinic.

PANDAS Network would like to stress that if a infection is indicated, antibiotics (and not necessarily only amoxicillin) is needed. Oddly, the article  lists a variety of possible treatments but only states “sometimes the antibiotic amoxicillin”. The possible need for antibiotics is very important to note since “in the Stanford PANS Clinic sample of 50 youth, PANS was associated with strep infections (65%), mycoplasma bacteria (13%), viral or urinary tract infection (58%), and ear and other infections in 16%.” All of those listed infections need antibiotics and some (like Mycoplasma) actually would not even be eradicated with amoxicillin, but needs a different “antibiotic family”.

To read the article in its entirety, visit http://bipolarnews.org/?p=2602.

Symposium Presentation Videos Now Online

Watch Learn Share

 

PANDAS Network is happy to share presentations from the West Coast PANDAS/PANS Symposium!

These videos are available for free and can be viewed below or found at youtube.com/pandasnetworkvideos. Links to these informative presentations will also be permanently housed on the PANDAS Network website.

Thank you to the providers, researchers, and parents that appeared at the Symposium and to those who agreed to make their presentations available to the public. These videos are such a valuable sources of information.

 

 

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Welcome and Opening, West Coast PANDAS/PANS Symposium April 2014

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PANDAS, PANS and Beyond…
Dr Susan E Swedo

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“The Brain, the Immune System and Encephalopathy”
Dr. Melanie Burgos-Alarcio, Pediatric Neurologist, Leading PANDAS/PANS Physician

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“PANDAS/PANS What Are The Questions?”
Dr. Michael Cooperstock, Chief, Division of Infectious Diseases and Rheumatology
Department of Child Health, Columbia, MO

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“Think Outside the Box”
Amy Smith, Nurse Practitioner, Integrative Medicine, Director PANS Program,
Hill Park Medical Center, Board Member PANDAS Network

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Teresa Gallo, Parent, West Coast PANDAS/PANS Symposium April 2014

 

 

Interested in watching more informative videos?
Click here to visit our Video Library!

 

A Link Between Perianal Strep and PANDAS

Current Issue

An important fact to remember when dealing with possible PANDAS is that strep can occur in more places than the throat! PANDAS is not solely related to strep THROAT. It is triggered by Group A β-hemolytic streptococcal [GABHS]) infections.

As previously discussed in 2010’s The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus,  and Related Disorders: A Way Forward, “GAS is a bacterium that has the capability of causing a wide range of infectious illnesses. These range from suppurative infections including pharyngitis, impetigo, necrotizing fasciitis, scarlet fever, and septicemia…”

The newest abstract “A Link Between Perianal Strep and Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infection (PANDAS)” in The Journal of Neuropsychiatry and Clinical Neurosciences, specifically points out perianal strep as being the strep infection that triggered PANDAS in 3 children. Perianal strep is important to remember as a possible culprit since it can be dismissed by the parent as a diaper rash  or it occurs in an area (the buttocks) that is obviously not always viewed on a daily basis.

As the article states, if a child has “concomitant perianal dermatitis and new-onset obsessive-compulsive symptoms and/or tics are strong indications for perianal culture and rapid antigen detection test in young children.”

In short, a physician can swab that anal region and determine if strep is present. If it is, they can begin appropriate treatment.

 

 

PANDAS in the News: The Tolley Family

PANDAS Network Sun

 

Thank you to the Tolley Family for participating in the article, Five Year Old Campbell County Boy Faces Fight With Rare Disease. Please read the article, including information on their upcoming fundraising event to go towards Grayson’s treatment.

“We just knew very early on that something was just not right” said Denise Tolley.

It was March 2012 when Grayson was diagnosed with strep throat. Not out of the ordinary for a four year old, but what happened next was far from normal.

“There was a lot of different symptoms that could be explained with some things, but then other pieces just didn’t fit” said Denise.

Following strep, Grayson began having violent mood swings, screaming temper tantrums. In a matter of months, he was diagnosed with OCD, ODD, and Asperger’s.

But a final diagnosis in March 2013 would prove to be his last.

 

Read the entire article http://www.wset.com/story/24276615/five-year-old-campbell-county-boy-faces-fight-with-rare-disease

 

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Families in the Media