1. Information courtesy of:
PANDAS Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
PANS Pediatric Acute-onset Neuropsychiatric Syndrome
Information courtesy of:
Dr. Sue Sweedo MD – Chief of Pediatrics and Developmental Neuroscience NIMH, Bethesda MD
Diana Pohlman – Founder, Pandas Network,
Amy Smith NP- Hill Park Medical Center. Petaluma, CA.
Renee Lumio RN – PANDAS Advocate

2. NH Parents Story of PANDAS Their Son, Age 3
Video
NH Parents Story of PANDAS Their Son, Age 3

4. IS THERE AN ASSOCIATION WITH
MOTOR MOVEMENT / NEUROPSYCHIATRIC DISORDERS AND INFECTION / AUTOIMMUNITY?

5. What are Autoimmune Disorders?
When the immune system cells target and
attack your body’s own tissues
Multiple Sclerosis
Type 1 Diabetes
Celiac Disease
Thyroiditis
Irritable Bowel Disease

6. PANDAS
Is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity.
This autoimmune reaction results in an acute onset of neuropsychiatric symptoms.
PANDAS occurs when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in the child’s brain, resulting in inflammation of the brain (basal ganglia section) and inducing a sudden onset of movement disorders, neuropsychiatric symptoms and abnormal neurologic behaviors.

7. “Brain on Fire” Autoimmune Malfunction Causing Brain Inflammation
of the
Basal Ganglia
“Brain on Fire”

8. 5 Clinical Diagnostic Criteria for PANDAS*
Presence of obsessive-compulsive disorder and/or tics
Pediatric onset of symptoms (age 3 years to puberty)
Unusually abrupt onset of symptoms or a relapsing-remitting
course of symptom severity
Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever)
Association with other neuropsychiatric symptoms
*NIMH criteria

9. What causes PANDAS?
STREP!
Streptococcal bacteria

10. The strep bacteria is a very ancient organism which survives in its human host by hiding from the immune system as long as possible. It does this by putting molecules on its cell wall that look nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues. This is called “molecular mimicry” and allows the strep bacteria to evade detection for a time.

11. A child may be diagnosed with PANDAS when:
Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever)
The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.
The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include;
Motor and/or vocal tics/ Obsessions/Compulsion
Separation anxiety/general anxiety
Behavioral or developmental regression
Deterioration in school performance
Emotional liability and/or depression
Irritability, aggression and/or oppositional behavior
Sensory or motor abnormalities 
Sleep disturbances, enuresis (urinary frequency)
Chorea form movements

12. PANDAS Clinical Manifestations
Relapsing-remitting symptom course
Young age at onset
6.5 +/- 3.0 years for tics
7.4 +/- 2.7 years for OCD
Boys out number girls 2.6 to 1
Comorbid tics and OCD common (65%)
Other comorbid symptoms occur frequently

13. PANS
A more recently defined disorder which encompasses the more familiar medical condition,  PANDAS.
PANS can be triggered by numerous infections, including Lyme disease, mycoplasma pneumonia, herpes simplex, common cold, influenza and other viruses

14. THE PANS CRITERIA PANS is a clinical diagnosis and a diagnosis of exclusion, in 2012 experts convened to further clarify a working criteria:
Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
Anxiety
Emotional liability and/or depression
Irritability, aggression and/or severely oppositional behaviors
Behavioral (developmental) regression
Deterioration in school performance Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, Systemic Lupus Erythematosus, Tourette Disorder or others.

15. Biology of PANDAS/PANS
Antibodies Cross-React
With Nerve Receptors
Infection
Occurs
Antibodies Attack
Brain Function
SYMPTOMS:
Obsessive Compulsive Disorder
Tics
Neurologic disorders
Anti-social Behavior
Body Produces Antibodies
That Recognize Infectious Agent
PROBLEM:
Treating Symptoms Rather than Underlying Infection-Triggered Autoimmune Condition

16. Laboratory testing
• A throat swab (rapid and culture) to test for strep can be done when symptoms first appear.
• In addition, blood work should be completed for ASO and D-Nase B 
Only 54% of children with strep showed a significant increase in ASO.
Only 45% showed an increase in anti–DNase B.
Only 63% showed an increase in either ASO and/or anti–DNase B
Other co-infections should also be considered if strep is ruled out: EPSTEIN BARR VIRUS,HERPES SIMPLEX VIRUS, LYME DISEASE, CANDIDA, AND MYCOPLASMA PNEUMONAIE. 
Other testing:
ANA
IgG subclass 1,2,3,4
CD4 (overall immune status)
IgM and IgA

17. The Cunningham Panel™ of Tests
Comprised of five different assays, four of which measure the level of circulating antibodies directed against different neurologic receptors or antigens, and one assay which measures the immune stimulating intensity of the patient’s serum against neuronal cells.
The collective results of the panel of 5 tests provide an assessment of the anti-neuronal and autoimmune state of the patient at the time of testing.
The physician is provided a composite report containing the 5-assay results, each compared to normal controls. The collective results can aid the physician in determining a proper diagnosis and support the appropriate treatment decision.
Moleculera Labs, Inc. is a fully accredited clinical laboratory certified by CLIA* and approved by COLA into their Laboratory Accreditation Program. These are U.S. state and federal accrediting agencies that oversee and monitor testing quality within the clinical laboratory industry. CLIA Certification Number: 37D ; COLA ID:

18. Report Format 5 Assays Quantitative Results Normal Ranges
4 ELISAs
CAM KII
Quantitative Results
Normal Ranges
Visual Results and Normals
Integrated Results

19. Medications Used

22. Discovery of PANDAS
Both PANDAS and Sydenham’s chorea share similar symptoms, which suggests a common neurologic autoimmune disease process. Studies from the NIH, as early as 1958, reported high rates of OCD behaviors in children with Sydenham’s chorea. Neuropsychiatric symptoms predate the choreiform movements in this disorder. 
In the 1990s, the NIH identified a subgroup of children who presented with a sudden onset of OCD and/or tics in association with a recent group A streptococcal infection.

23. However, this group did not meet criteria for Sydenham’s chorea
However, this group did not meet criteria for Sydenham’s chorea.1 This subgroup was subsequently identified as PANDAS.
PANDAS can be thought of as “rheumatic fever” of the brain, points out Dr. Susan Swedo, lead investigator from the NIMH. “And just as Sydenham’s chorea gives you abnormal movements, PANDAS gives you abnormal thoughts and behaviors.”

24. Understanding the School Nurse’s Unique and Important Role
PANDAS /PANS in School
Understanding the School Nurse’s Unique and Important Role
Amy Fishman Smith, MS, Nurse Practitioner ©
Director, PANDAS/PANS Treatment Program
Hill Park Medical Center. Petaluma, CA.

25. One out of every 200 children* in the United States may suffer from
PANDAS/PANS
(immune-modulated, inflammatory neuropsychiatric illness)
*PANDASNetwork.org

26. Incidence Comparison of PANDAS with Other Common Chronic Childhood Illnesses
PANDAS 1:200 (PANDASNetwork.org)
Type I Diabetes 2.5: 1000 (American Diabetes Association)
Severe visual impairment 1:1000 (Am Foundation of the Blind)
Asthma 9:100 (CDC.gov)
Cystic Fibrosis 1:3700 (Am Lung Association)
Developmental Disabilities: 1:6 (CDC.gov)
Mental Health Issues 1:5 (CDC.gov)
Cerebral Palsy 2.5/1000 (cerebralpalsy.org)
Sickle Cell Anemia 1:500 African Am. (Sickle Cell Disease Assoc of Am)
Obesity 6-11 yr olds 18/100 (CDC.gov)
Malnutrition (food insecurity) 22:100 (USDA)

27. School Nurses Crucial Role
School Nurses advance the well-being, academic success and lifelong achievement and health of students.*
facilitate normal development and positive student response to interventions;
promote health and safety including a healthy environment;
provide direct care to intervene with actual and potential health problems;
provide case management services;
actively collaborate with others to build student and family capacity for adaptation, self-management, self advocacy, and learning
*NASN, 2011

28. How We Learned of PANDAS/PANS
School = 0%

29. How Long Did It Take for Diagnosis?

30. How Many Doctors Did We See Prior to PANDAS Diagnosis?
# of Doctors Seen

31. Other Initial Diagnosis?
Obsessive Compulsive Disorder (OCD) – 51%
Anxiety – 51%
Attention Deficit Disorder (ADHD) – 31%
Tourette’s Syndrome/Tic Disorder – 18%
Asperger’s Syndrome – 16%
Oppositional Defiant Disorder – 14%
Pervasive Development Disorder (NOS) – 4%
Conversion Disorder – 2%
Others – 24%
Bipolar, Late onset Autism, Depression, Lyme, Tic disorder, selective Mutism, Psychosis 31

32. Special School Accommodations?

33. School Nursing of PANDAS/PANS Children
Surveillance / Recognition of PANDAS spectrum
Keep Environment Safe – tell parents if strep in school.
Liaison – student / family / medical provider / school IEP/504 meetings, community .
Develop and implement IHP.
Direct Care: Referring for strep testing; dispense medications; monitoring, Encouraging – THIS FLARE WILL PASS.
Resources and referrals – Medical, PT, OT, social skills groups, CBT, speech or language, family and/or individual therapy, community supports.

34. School Nursing of PANDAS/PANS Children
Resource - educate teachers and support staff
Challenge the prevailing assumptions of why this child is acting like this – do not blame the child.
FLARES (exacerbations) – info sheet for teachers
What do they look like?
How do they start?
What can you do to defuse?
Attendance modifications / flexible home & hospital program

36. IEP and 504 Plans
PANDAS / PANS is a primary medical disabling condition that poses significant threat to students function and success,
and thereby warrants educational modifications, accommodations and supports
Bear in Mind:
Symptoms are intermittent, waxing and waning
Require fluid access in and out of services, and
PANDAS / PANS Spectrum
504 Coordinator* Starring Role
What services are reasonable and appropriate for child to keep up with schoolwork in the least constrictive environment?
IEP falls under OHI (Other Health Impairment)

39. Closing Reminders… PANDAS/PANS is a spectrum disorder.
Kids Can Get Better.
Not all students will have all of these things.
Waxing and waning symptoms.
Create fluid access in and out of services.
Earlier diagnosis and treatment = better outcomes.
Be a partner with the family – let them know if you or a teacher see something.
Don’t let anyone blame the child for their illness.