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


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 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.


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.


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].”

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

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.




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


PANDAS, PANS and Beyond…
Dr Susan E Swedo


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


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


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


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


Related Posts:
Families in the Media

NE Conference Highlights

PANDAS Network Table

 UPDATED 12/9/2013 to include additional notes.

November 9 and 10 proved to be a well informed and uniting day for parents, researchers, and physicians. With over 400 people in attendance, this was the largest conference solely devoted to PANDAS and PANS. Thank you to the NE PANS/PANDAS Parents Association for their great work and to all those that presented and attended.

Below, you will find links to some of the presentations along with a compilation of notes taken by various people. Thank you to Vickie and Chrissy D.


Presentation Slides

Click to be brought to the presentation.

Swedo pdf 1

PDF #1 : http://tinyurl.com/swedopart1
PDF #2: http://tinyurl.com/swedopart2

Chapman pdfMicco pdf




Bock pdf

PDF #1: http://tinyurl.com/BockPANS1
PDF #2:http://tinyurl.com/BockPANS2

Hubbuch pdf




Presentation Highlights

Audience 2


Dr. Susan Swedo

General Information

  • It may be more appropriate to refer to PANDAS as a “misdirected immune response”.
  • If you cannot remember the onset, there is a chance it is not PANDAS.
  • Not all kids with OCD and tics have PANDAS
  • PANDAS may be created by the following: Strep > genetic susceptibility > misdirected immune response
  • An example of a case where on an MRI, the caudate size was less inflamed post treatment (by 20%)
  • Rule our Rheumatic Fever
  • Test for ANA (antinuclear antibodies)
  • SSRI- start low. 1/20 of the regular dose may be indicated for initial dosing
  • Affirm to children that only 1% of their brain is affected. The other 99% is healthy and working to help you heal.
  • Sleep studies are in the works
  • EEG may be something to look into with sleep abnormalities and may get you treatment.

Sydenham’s Chorea (SC)

  • 75% of kids with chorea have OCD
  • SC is a rule out for PANDAS. If you suspect PANDAS or cannot get a diagnosis, rule out the possibility of SC.
  • If you are able to get a diagnosis of SC, you will get a treatment plan.
  • Physicians need to taught the difference between chorea and choreiform movements.


  • PANDAS and PANS is not only OCD. Must have other symptoms present.
  • 80% of kids have urinary frequency. Make sure to mention this at pediatrician’s office. This will lead to testing including UTI. It may get a documented infection and treatment.


  • Don’t chase titers. Even with a treated infection, titers will naturally rise for a bit
  • 65% of kids will get strep during the school year.
  • You can test positive without classic symptoms. Stomach ache and headache can be the only symptoms of strep you get.
  • Strep is not the only trigger (PITAND)


  • H1N1 outbreak greatly increased number of PITAND cases
  • When developing PANS criteria, wanted to include post puberty individuals.
  • Restrictive eating – not necessarily anorexia, but some just cannot swallow. Feels odd. Swallowing study may be indicated.


Dr. Dritan Agalliu


  • TH17 immune cells is a normal immune response. If interrupted, erroneous events occur


  • Streptococcal specific immune cell entry introduced via the CNS is an unusual route
  • Subset of strep strains can become erroneous and create reactions
  • 20-30% of kids with RF will develop SC.

Blood Brain Barrier

  • How do antibodies get access to the brain?
  • The Blood Brain Barrier (BBB) is a physical barrier
  • BBB breakdown is known to occur in stroke, Acute Traumatic Brain Injury, brain infections, and autoimmune disease such as PANDAS and PANS.
  • Junctions that protect the brain can be damaged and destroyed

Collaboration with Dr. Pat Cleary

  • Researching the immune response to intranasal infection in mice.
  • Mice became sick with classic symptoms, but then resolved
  • After 3rd or 4th infection, classic symptoms no longer appeared
  • Repeated intranasal infections induced IL-17 immune t-cells in NALT (Nasopharynx-Associated Lymphoid Tissue). Side note: the IL-17 family has been linked to many immune/autoimmune related diseases

Research observations

  • T-cells were found in the brains of the mice. They did not know if that would actually occur.
  • OLFACTORY BULB part of the brain was most affected by the t-cells
  • Biocytin tracer was used to measure the defects of the BBB permeability.
  • Largest are affected was the area that controls a sense of fear.
  • To see what BBB damage occurred, looked for antibodies that were normally present—-they found auto-antibodies.
  • The bacterium itself (strep) was NOT found in the brain.
  • T-cells were present in the brain of the MOUSE for 58 days. In the life of a mouse, that is considered long term. What would that translate into human?
  • T-cells may stay in the brain and be reactivated with other infections.
  • T-cells start in the olfactory bulb and migrate
  • What are the long term side effects of a leaky BBB? Will the BBB remain susceptible?


Dr. Beth Latimer
  • Has seen over 2,500 patient with PANDAS
  • PANDAS is a tragedy due to lack of recognition
  • Has seen a few kids from IVIG study due to relapse from reinfection
  • When tics are the main symptoms, may be categorized as a “PANDAS variety” due to new diagnosing criteria.
  • Dr. Latimer shared numerous case studies during her presentation to show the varying forms of presentation and the spectrum of the disorder
  • General observation/question asked…Is PANDAS an early presentation of Autoimmune Encephalitis?
  • We need to look at why urinary frequency occurs in so many children.
  • Referred to the Rey-Osterrieth Complex Figure Test and how numerous PANDAS children fail this test. See the following paper for more information: http://neuro.psychiatryonline.org/article.aspx?articleid=181293
  • This does not appear to be the same strep that causes RF
  • IgG range tends to be lower part of normal
  • Low Vitamin D has been associated with autoimmune disease. Get Vitamin D levels checked – do this before giving supplements and at times throughout the year as levels will change with seasons.
  • If giving steroids, morning dosing is preferred, no later than 3pm. This will decrease the chance of affecting sleep.
  • Flonase observation: Is it really a good idea to suppress the immune system in the nasopharynx?
  • Gut flora: There is something different about the guts of PANDAS kids. They tend to be able to tolerate long term antibiotics very well even if not taking a probiotic.
  • Would not recommend naproxen sodium as a NSAID…way too rough on stomach.


Dr. Jan Tona

Current Retrospective Survey Being Conducted

  • http://pandasnetwork.org/survey/
  • 410 enrolled to date – minimum 500 wanted. May remain open until end of 2013.
  • Future research can collaborate and access the respondents for possible participation in future studies.

Past Research at Univ. of Buffalo


Dr. Kyle Williams
  • Spoke a bit on YALE-NIMH IVIG study
  • Primary outcome measurement was decrease in CY-BOCS a standardized tool to measure OCD severity
  • Double blind placebo controlled study; different researchers screening, present during infusion and doing post-analysis to blind reviewers
  • MRI pre/post treatment
  • Autoimmune antibody analysis pre/post treatment (Cunningham)
  • Inflammatory cytokine analysis pre/post treatment
  • Serum and CSF t-cell profile
  • Screened 1100 children with 37 participants—18 IVIG 17 placebo
  • In the analysis phase of trial and hope to be completed soon


Dr. Rosario Trifiletti
  • Narrow definition of PANS/PANDAS good for research but not in clinical practice. You don’t want to leave anybody out you could help.
  • ‘No child left behind’
  • Reviewed his different age stratifications of PANS and what you might see at different stages (‘autism, PDD, Swedo Syndrome, Kovacevic Syndrome, LeRoy Syndrome, Excorcist Syndrome’)
  • Touched upon his genetic testing  and emerging patterns/clusters of defects seen in PANS
  • Touched upon his alternate fever response and histamine dysfunction but didn’t have enough time for details


Dr. Kenneth Bock
  • Talked on integrative approach to neuro-immune disorders/PANS/PANDAS
  • Discussed Immune Balance – a balanced cellular and humoral response
  • Importance of gut health in immune disorders—75% of immune cells found in the gut
  • Important to deal with the underlying factors that contribute to recurrent infections/autoimmunity and chronic inflammation
    • Toxins/heavy metals
    • GI issues: dysbiosis/intestinal hyper-permeability/food allergies and sensitivity
    • Environmental allergies and sensitivities
    • Nutritional imbalances and deficiency
    • Hormonal and immunological imbalances
  • FIRST TACKS law – “if you are sitting on a tack; it takes a lot of Risperdal to make it feel better. The appropriate treatment for tack sitting is tack removal.”
  • SECOND TACKS law—“if you are sitting on two tacks, removing one does not produce a 50% improvement. Chronic illness is, or becomes multifactorial.” Adapted Sidney Baker
  • Talked on the immune threshold – illustration of a kettle with layers influencing immunity—genetic predisposition, nutritional deficiencies, allergies and sensitivities; environmental toxins, psychosocial stress etc. Then showed adding infectious agents and kettle spilling over due to immune imbalance.
    • Discussed dietary modification as anti-inflammatory therapy
    • Mentioned caution w/ NSAIDS as contributes to leaky gut
    • “Leaky gut leaky brain” was his takeaway lesson
  • Treatments (in addition to traditional therapies):
    • Treatment w/ Omega 3 fatty acids to decrease inflammation
    • Curcumin
    • methylB12 – neuroprotective effect and enhances methylation
    • vitamin D3 –and immunoregulative function
    • probiotics & prebiotics
    • exercise/ tai chi
    • talked on Candida/yeast—how a big trigger for many of our kids; leading to dysbiosis; importance of yeast’s  role in dysregulation of immune response.


Dr. Jolan Walter—MASS General Hospital
  • Will be part of team at new Mass General – she is allergist/immunologist
  • Neurobehavioral and immunology clinic (not calling it a PANDAS clinic)
  • Treating with IVIG – sometimes multiple doses—replacement dose is 0.5gm/kg; anti-inflammatory dose 1.5/2gm/kg
  • Over 50% of IVIG products use is off label in medicine
  • Using Rituximab for refractory cases—it targets B cells—is also used in RA and autoimmune disorders (off label) – not used in “typical cases”, very extreme and difficult to heal cases.


Dr. Jamie Micco
  • Talked about the use of CBT (cognitive behavioral therapy) in PANDAS OCD
  • Families may unwittingly provide excessive accommodation and reassurance for child’s compulsions and rituals, which feeds into behavior
  • Cognitive training—think of obsessions as ‘spam messages’
  • Developing fear and avoidance hierarchies and working through situations from least amount of fear to most fearful (ex. Start by exposing child to least fearful situation and work up)
  • Not much research on CBT for PANDAS subtype of OCD—only Dr. Storch
  • Don’t embark upon CBT at the height of symptom exacerbation, b/c children may be too dysregulated
  • Booster sessions important for PANDAS children, given their risk for relapse


Peggy Chapman, CNS
  • Talked on psychiatric management and behavioral interventions in children with PANS
  • Slides explain in detail her talk—she started on how to explain PANS to your child
  • Recommended naming your PANS—give it a name, code word
  • Ride out the flares—scary but they usually only last a week
  • Behavioral interventions
  • Anxiety attack—in PANS it’s neurological—reasoning doesn’t work in the heat of the moment
  • PANS children with OCD usually cannot talk about or describe their OCD in office, unlike traditional OCD
  • Helpful maneuvers—empathy, normalizing, validating & making manageable
  • Total meltdown attack—stay calm & reassuring; don’t try to fix problem with minimal conversation; stay with kid but not too close
  • OCD—not becoming an unwitting accomplice
  • Rule of 3: participate 3 times then you’re out; time rules to re-engage in OCD again
  • Readiness for CBT—need to be stabilized first
  • Tics—if you bring attention to the tic there will be an increase
  • “tics can be suppressed but not denied”
  • Reviewed neurotransmitters and then went through different classes and names of drugs that might be used


Dr Jeanne Hubbuch
  • Ticks carry multiple infections – nature’s ‘dirty needle’
  • Lyme disease must include borrelia and co-infections
  • Lyme can occur any time of year, and in any region of the US and Canada
  • Transmission can occur within 4 hours—no safe time of attachment
  • PREVENTION—spray yard with permethrin; cut down shrubbery; low grass; clear under trees; body checks; DEET (not infants); oil of lemon and eucalyptus
  • Tick tubes (Damminix) can decrease larvae/tick population
  • To send away ticks and test for disease  http://www.tickdiseases.org/
  • Ticks also carry anaplasma, ehrlichea; babesia, bartonella, mycop, viruses


  • Lyme Disease is a clinical diagnosis
  • Early diagnosis—tick bite and symptoms
  • EM rash is definitive with or without tick or labs
  • Lyme disease is great imitator
  • All organs can be affected and symptoms often vague

CDC testing

  • Elisa 50% false negative
  • Western Blot—CDC def 2 IgM bands/5 IgG bands
  • Band 41—non-specific
  • Lyme specific bands—18, 23, 31, 34, 39, 83-93
  • Igenex tests all bands including 31 and 34
  • Advanced Lab at 16 weeks 94% accurate but only one peer-reviewed article to support
  • CD57 test—more accurate for adults; sign of chronic disease; lower result sicker person


  • Early—4 weeks; amoxi; ceftin; doxy if >8 years old
  • 30% can have neg western blot
  • Biofilms can make treatment difficult
  • Co-infections – sicker
  • Antibiotics—cell wall agents; intracellular agents; cyst and biofilm agents; often used together


  • Testing even less accurate
  • Bartonella—more CNS than skeletal S/S
    • Gi upset
    • Gradual onset
    • Can cause rages
    • Responds to Azithro; Sulfa Rifampin; fluroquinolones (cipro; levaquin)
  • Babesia—abrupt onset—night sweats
    • Cycles every few days
    • Fatigue; headache; chills
    • Cough; palpitations
    • Responds to antimalarials: Mepron; Azithro; Clinda Sulfa
  • Ehrlichea/Anaplasma
    • Can have high fever
    • Knife like headache; sore muscles
    • Responds to Doxy; fluroquinolones; rifampin
  • Mycoplasma Pneumo
    • Difficult to treat; sickest patients; major fatigue; neuro s/s


Dr. Charles Jones
  • Talked on infection-induced autoimmune encephalitis (Lyme-induced)
  • Few case studies; video of recovered child
  • Bands 31 and 34 increased incidence of autoimmune sequalae
  • Triggers for anti-neuronal antibodies are Strep; MycoP; Lyme and co-infections
  • Treatment—eradicate underlying infection with antibiotic and if necessary IVIG
  • IVIG — Replacement therapy vs. modulating therapy
  • Lower dose of IVIG can sometimes make it worse – t cells stimulate b cells to make more anti neuronal antibodies, causing increase in encephalitic process
  • Success—eradicating the infection and reversing the autoimmune process
  • If an immunization contains a component of an organism in our genome, we make antibodies to this infectious agent and we make antibodies to ourselves.



Related posts:

NE PANS/PANDAS Conference in Review By Diana Pohlman, Executive Director

Donate to Dr. Agalliu’s Lab: UC Irvine Research (includes information on lab)

Donate to Dr. Cunningham’s Lab: University of Oklahoma Research