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Working with Students with PANS/PANDAS

Margaret S. Chapman, MSN, PMHCNS-BC

Catherine Teal, RN

Melissa Glynn-Hyman, LICSW

Lisa, parent

November 7, 2017

Goals of Presentation

• What is PANS/PANDAS

• How is PANS/PANDAS diagnosed?

• Historical Perspective

• Review current neurobiology findings of PANS, other MH issues –how they intersect?

• Identify treatments for a patient with a PANS/PANDAS, medical and psychiatric

• Treatment course: what to expect

Goals of Presentation

• Educational supports: What the schools see and what do they need to do?

A) Nurse Role: Cathy Teal

B) Therapist Role: Melissa Glynn-Hyman

C) Parent Role: Lisa

• Questions and discussion

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What is PANS & PANDAS

PANSPediatric Acute-onset Neuropsychiatric Syndrome

PANDASPediatric Autoimmune Neuropsychiatric Disorders

Associated with Streptococcal Infections

What is PANS & PANDAS?

• PANS and PANDAS is a condition in which a subset of children and adolescents experience an encephalitic-like (inflammation of the brain) onset of neuropsychiatric symptoms

• The symptoms occur following exposure to an immune trigger (infection) such as Group A Streptococcus, Mycoplasma Pneumonia (Walking Pneumonia), Lyme and Viruses (e.g., Mononucleosis, Herpes, Flu, etc.)

What is PANS & PANDAS?Immunology

• Antibodies created to fight these infections become misdirected and attack the brain, especially the basal ganglia.

• This autoimmune reaction results in an acute onset of neuropsychiatric symptoms. Both PANS and PANDAS are clinical diagnoses. PANDAS is a subset of PANS.

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Overview

• Average Age of Diagnosis:• 1-3yrs: 11%, 4-9yrs: 69%, 10-13yrs:19%, 14+ yrs:1% (numbers

are likely under reported for > 13 yo due to dx hx of PANDAS)

• A Spectrum Disorder • Initial and Subsequent triggers vary from child to child• Symptom Mix and how they present vary from child to child• Symptom Severity varies from child to child

• Immune based conditions are found in about 71% of patient’s families

• Can Adults have PANS? • Probably as it was only discovered recently• Studies have not been done in adult onset

Diagnosis of PANS & PANDAS

Either a

• Sudden onset of Obsessive Compulsive Disorder: inappropriate thoughts, rigid rules, repetitive actions, etc.

Or

• Severely Restricted Food Intake: limiting food choices, fear of choking, frank refusal to eat, will not even swallow spit

• Accompanied by 2 of the following acute onset and severe symptoms:

OCD or EDaccompanied by 2 of:

• Anxiety and/or depression- including separation anxiety, terror, aggression, irritability, oppositional behavior, temper tantrums, rage (can be severe). Differential dx: Sort out if anxiety is obsessive worry that bad things will happen, e.g. mom will die if I leave vs traditional sep. anxiety. If under 12, can’t leave mom, if over 12, cannot leave the house.

• Sensory amplification to light, sounds, smells

• Motor Abnormalities including handwriting, choreiform (piano playing movements), hyperactivity, TICS***, inability to dress, do ADLs, etc.

*** 1998-2013 PANDAS dx criteria: sudden onset of OCD or Tics

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OCD or ED(+ 2 of cont.)

• Behavioral (Developmental) Regression: baby talk, thumb sucking, other regressed behaviors

• Deterioration in school performance: often looks like ADHD symptoms (but did not have ADHD before), short term memory deficits, executive function; visual motor deterioration, esp. impacting math and science

OCD or ED(+ 2 of cont.)

• Somatic signs: Sleep disturbances: inability to sleep alone, talk and movement in sleep (active in REM sleep), stomach aches (sometimes why eating is restricted)

• Somatic can include: Enuresis, day or night and/or urinary frequency; occ. encopresis. Teachers see a child going on bathroom breaks very frequently.

• Diagnosis is done through thorough history taking, rule outs and supportive lab work.

What Does PANS/PANDAS Look Like?

• My Kid Is Not Crazy (movie trailer)• http://www.mykidisnotcrazy.com/

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Before & After PANSVisual Motor/Writing Changes

Before Acute Onset During Flare

Susan E. Swedo, M.D. Pediatrics & Developmental Neuroscience Branch NIMH, NIH Intramural Program

Before & After PANSVisual Motor/Writing Changes

Susan E. Swedo, M.D. Pediatrics & Developmental Neuroscience Branch NIMH, NIH Intramural Program

Acute Illness Convalescence

Demonstrates Age Appropriate Self-Portrait

Demonstrates Behavioral Regressive Self-Portrait

Academic Symptoms

• Loss of Math Skills• Decline in Handwriting Skills (Dysgraphia), copying, coloring• Unable to Make Simple Decisions• Poor Short-Term (Working) Memory, Slow Processing Speed• Decline in Creative Work (Art, Creative Writing)• Avoidance of High Sensory Environments (Art, Music, Cafeteria,

Physical Ed, etc.)• Work Refusal (School Work/Homework/Writing Assignments)• Perfectionism (Erasing through paper, Needing to start over)

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Academic SymptomsExecutive Function Problems

• Difficulty with Working Memory and Holding Information

• Poor Organizational Skills

• Time Management Issues

• Difficulty Planning/Prioritizing Attention on a Single Task

• Difficulty Making Decisions

ImmunologyWhat Goes Wrong?

• IgG (Navy): Antibodies in serum and extra cellular liquid. IgG gets to the war slowly (4-8 weeks), floating everywhere there is fluid, including your brain.

• In PANS the IgG has received the wrong intelligence. Cell mimicry occurs. The basal ganglia tissue looks like strep to the IgG antibodies.

• IgG is tricked by wrong cellular intelligence that this area of the brain area is infected and the IgG is directed to fight back. The Navy keeps shelling the basal ganglia! Brain scans show enlarged Basal Ganglia in PANS, OCD and Tourette’s.

The Brain and Function

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Basal Ganglia

• The basal ganglia is in the forebrain and strongly interconnected with most of the brain. Parts of the basal ganglia include striatum (caudate nucleus, dorsal striatum, putamen, nucleus accumbens and olfactory tubercle), globus pallidus, ventral pallidum, substantia nigra and subthalamic nucleus.

• Behavior disorders noted in this region include movement (e.g., tics/Tourette’s), OCD, addictions (the reward center), etc.

Basal Ganglia

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Neurotransmitter:Dopamine (DA)

• Dopamine (DA): The key neurotransmitter for the Basal ganglia.

• Impacts: Alertness, cognition, appetite, motor control, reward, working memory, motivation, voluntary movement, motivation, punishment, sleep, mood, attention, working memory and processing speed

• Abnormal levels of Dopamine 1 and Dopamine 2 ReceptorAntibodies (against) are found in children with PANDAS/PANS

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Neurotransmitter: Norepinephrine (NE)

• A neurotransmitter and our stress hormone, affecting concentration, created from Dopamine.

• Norepinephrine = Focus vs. Dopamine = Alertness• Norepinephrine (Noradrenaline) => Epinephrine = Adrenalin = creates the

flight or fight response.• Physical symptoms connected to adrenalin include increased heart rate,

blood pressure, feeling short of breath and muscular tension. Pacing and movement reduce high adrenalin. This behavior is often seen at night in children with PANDAS. They have the look of “deer in the headlights, pupil changes, usually enlarged.

• Norepinephrine impacts attention, balanced mood, intuition, concentration, execution, perseverance and recall memory.

PANDAS/PANS Illness Notes

•Can be extremely ill•Can have extreme compulsions (licking shoes, barking)•Can have Motor & Phonic tics (whooping, wringing hands (Sometimes this is the presenting symptom of PANDAS)•Can have terrifying episodes of extreme anxiety or aggression.

• PANS symptoms overlap with psychiatric disorders, such as OCD, Tourette’s syndrome, ADHD, depression, and bipolar disorder. However PANS is only diagnosed when these symptoms present acutely (though sometimes years later).

• Some children with PANS have visual or auditory hallucinations thus symptoms can seem to be identical to the psychotic symptoms seen in conditions such as schizophrenia, bipolar disorder, and lupus cerebritis

Medical TestsDiagnosis Support

• Throat swab to rule out strep, rapid and 48 hour culture. Consider perianal swab if reddened anal area or hx of this. Nasal swabs are sometimes done.

• Blood work: Antibodies to strep = Anti-streptolysin (ASO) and Anti-dnase B (Dnase B Ab); occ. Streptozyme is done

• Additional labs:• Mycoplasma Pneumonia (IgM and IgG), Mononucleosis, Herpes and

Tic borne illness (Lyme, Bartonella, etc.) • Immunoglobulins, ESR, CRP, ANA, Ferritin• PCP and/or ER have often done basics: CBC, Comp Chem., Thyroid

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PANS/PANDAS Treatment3 pronged approach

Overview of Treatment of Pediatric Acute‐Onset Neuropsychiatric Syndrome – Swedo et al  (JCAP 2017)

PANS is a broad spectrum of of neuropsychiatric conditions with various etiologies. Thus treatment is based on three complementary modes of intervention:

1. Treating the symptoms with psychoactive medications, psychotherapies (particularly cognitive behavioral therapy), and supportive interventions (including school).

2. Removing the source of the inflammation with antimicrobial interventions.

3. Treating disturbances of the immune system with immunomodulatory and/or anti-inflammatory therapies.

Treatment“Traditional Treatments”

• Psychiatric & Behavioral symptoms need to be managed alongside inflammatory and infectious processes treatment. Traditional treatment should occur, including lots of supports for parents. Sometimes parents benefit the most from support.

• Therapies must be individualized based on symptoms and severity• Some may not ever need psychiatric pharmacological treatment. • Some may need adjustments of meds or removal as medical

treatments take affect.• A child/adol. in the initial inflamed state cannot use therapy.

Therapy when they are calmer helps them with future minor flares.

Treatment

• Hospitalization occurs with severe symptoms: food restrictions, psychosis, aggression, severe tics. Psych units are ill equipped to handle medical treatments and med-surg. units are not equipped to handle psych issues. Ideally, parents should be allowed to stay with child who has severe separation anxiety preventing child’s decompensation even further. Medical units usually have parents stay. Psych units do not.

• Hospitalization is especially traumatizing to parents if PANS/PANDAS is denied by clinicians. Parents will struggle to trust any treatment that is being recommended.

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TreatmentPsychopharmacology

• Go low and slow. Start with one-quarter to one-half dose.

• SSRIs have about a 50% side effect rate.

• Anti-histamines, Benadryl and Hydroxyzine are calming. Clonidine and Guanfacine are helpful, esp. if tics are part of symptoms. Benzodiazepines may be helpful for anxiety and aggression.

• Stimulants for ADHD symptoms rarely helps.

• Anti-psychotics: used for high aggression, self-harm, psychosis and if neg. reaction to benzos and antidepressants.

TreatmentMild-Moderate Symptoms

• Antibiotics and ‘‘tincture of time’’ may be enough if used early in illness. Augmentin and penicillin are often first choices but cephalexin, cefadroxil, clindamycin, azithromycin, or clarithromycin are often required. There is a 10 % chance of strep resistant strain to cillins. Dose for weight, same as infection treatment doses.

• One month trial period is usually done to see if there is a response. Prophylactic doses of antibiotics are used thereafter. “Cillins” do not treat Mycoplasma Pneumonia. Azithromycin often used or other macrolides.

TreatmentAnti-inflammatory Drugs

• NSAID (Advil tid or Aleve bid) trial. Start with 3-5 days to see if it helps to determine longer use. Helpful when antibiotics start to offer quick relief.

• Lasting remission can happen from antibiotics alone. Antibiotics are anti-inflammatory! https://www.ncbi.nlm.nih.gov/pubmed/12054075

• Discontinuation of antibiotics and NSAIDS to monitor symptoms can be done with a period of no symptoms/flares. Prolonged use of meds can be handled with precautious measures. Strong probiotics should be given with antibiotic use, bid with antibiotic.

• Persistent symptoms may require short oral corticosteroid burst.

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TreatmentModerate-Severe

• Moderate-Severe: prolonged corticosteroids or repeated high-dose corticosteroids may be indicated. IVIG (Intravenous Immunoglobulin) is typically warranted. Because corticosteroids improvement is not long lasting and prolonged use has permanent side effects, IVIG is preferred. Number of IVIG doses varies.

• Tonsillectomy can reduce symptoms. Research: Tonsils that harbor the most bacteria are small to medium in size.

• Extreme & Life-Threatening: therapeutic plasma exchange (PEX) is the first-line therapy either alone or with IVIG, high dose corticosteroids and/or rituximab. • Five single-volume PEX for 7–10 days are considered optimal.• Rituximab is indicated with evidence of neuroinflammation or auto-immunity.

TreatmentChronic Condition

• For some a “temporary post infectious pathological immune response has evolved to become a chronic autoimmune condition”. They may need more frequent aggressive immunomodulatory therapies –repeated high-dose methylprednisolone or corticosteroids, rituximab or immunosuppressants.

• If there is an ongoing partial response I often have patient checked for “chronic Lyme” (vs acute case).

Relapse/Exacerbations

• Once the process of PANDAS/PANS has started, a child can relapse if they become ill or have exposures to other’s illness at home or school. This can also happen sometimes with environmental challenges (vaccinations, mold, etc.).

• In early treatment the child is more vulnerable to these relapses. Late Nov. – late April are worse due to seasonal illness patterns.

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Why Consider Infection for a Neuropsychiatric Problem?

Long History of Infection Causing Psychiatric Symptoms:• Syphilis, triggered by bacteria, was the most common cause of

dementia before antibiotics in mid-1900s. Early symptoms of syphilis could be mania, vivid delusions, incontinence, seizures, etc.

• Spanish Influenza: hypochondria, melancholia, mania, depression, anhedonia, catatonia

• Bartonella, a tic borne bacteria, can cause anxiety, psychosis, and rage.• Viruses: High levels of HERV-W (retrovirus), transmitted in

reproductive material can cause brain inflammation; higher in brains of those with schizophrenia, bipolar

PANS/PANDASRecent Research

• 2014: PET scan showed increased microglia (the brain’s immune cells) activity in the Basal Ganglia of PANDAS and Tourette patients (bilateral caudate and bilateral lentiform nucleus in the PANDAS group and only in bilateral caudate nuclei for Tourette patients) vs control group

• 2015: Tonsils of PANDAS patients had sig. higher cytokine (indicating inflammation) levels vs patients with strep (no PANS) or sleep apnea

PANS/PANDASRecent Research

• 2016: Mice studies show that after repeat strep exposures Th17 cells (part of the natural immune response) releases proteins (cytokines) that are known to break down the blood-brain barrier (now “leaky”).

Antibodies cross the “leaky blood-brain barrier” and enter the brain. These antibodies then attack tissues that mimic brain antigens (e.g., dopamine receptors) which creates abnormal motor and/or behavioral changes. Antibodies cluster around the basal ganglia (multiple neuron pathways), amygdala (flight/fight) and some at hippocampus (memory).

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PANS/PANDASRecent Research

• 2016: 87% (13 of 15) children with PANDAS had abnormalities detected with sleep study. 12 of 15 had REM motor disinhibition (e.g., excessive movement, laughing, hand stereotypies, moaning, or continuing periodic limb movements during sleep going into REM sleep (not normal)

• 2017: Survey response of 698 parent/guardians: 65% were males; 65% had infectious trigger (54% specifically strep)

• 2017: 31 patients with sudden onset OCD (62.5% male), treated with Azithromycin or Placebo, + probiotics: better outcome for Azithromycin group = p=0.003

Eating Disorder Research2016

• 49 studies reviewed in past 5 years “suggest altered activation in regions related to the fronto‐striato and the limbic circuits, which are theorized to have an important role in the pathophysiology of AN”.

• Increased structural connectivity within fronto-accumbal circuitry in the underweight state correlated with severity of eating disorder symptoms.

• Hypothalamic expression of inflammatory mediators found in an animal model of binge eating.

• Increased use of antimicrobial medication in bulimia nervosa and binge-eating disorder prior to the eating disorder treatment

Road Blocks to DiagnosisMedical

• PANS/PANDAS is often not diagnosed right away by medical professionals. Medical testing is only one facet of diagnosis. Most practitioners are not PANS/PANDAS literate. PCP is usually the first contact, often followed by psychiatry and/or neurology, esp. if tics are involved.

• Sometimes the infection is treated immediately so initial symptoms are not as severe; therefore not flagged. Infectious triggers and symptoms are not always immediately linked. Symptoms are blamed on age or other diagnoses. Symptoms often relapse and remit from month to month or year to year so big picture is hard to see.

• Many doctors still believe that PANS/PANDAS doesn’t exist. More studies are coming from the NIH and other researchers provide increasing evidence. Examples: The Journal of Child and Adolescent Psychiatry, Jan.- Feb. 2015 and October 2017 (JCAP). The American Academy of Pediatrics – which published an article titled “PANDAS/PANS treatments, awareness evolve, but some experts skeptical” (2017).

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Road Blocks to DiagnosisSchool

• Children are easily identified with PANDAS when their symptoms are shown at school. But more than likely you will see students that are more complicated to identify.

• Children often work extremely hard to cover up anxiety, OCD, sensory issues, rage, and/or emotional changes at school.

• Communication between School and Parents is often not extensive enough.

• Student already has a 504 or IEP for ADHD, Autism, or other health and/or academic impairments so symptoms are only seen as behavioral or part of the previously diagnosed disorder.

• Student switched schools and history not fully communicated.

PANS/PANDAS in School

• All staff: Inform parents if there is an episode of strep in the classroom. It is not necessary for parents to know which child has had strep, just that it has occurred. The teacher often knows the child was out with strep, not always the nurse.

• If teachers have been diagnosed with strep this too should be communicated. This would include art, gym, guidance, etc., personal.

School Nurse

• Can be the first person to establish a link between a recent or re-occurring strep infection with a sudden onset of atypical behavior. Early in the school year you may be the person who knows the child better over time than the teacher.

• Nurse can help report any abrupt changes in behavior, eating habits, or school performance to family. Nurse can inform parents of any communicable illness in classrooms. Parents can inform school nurse of any health changes.

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PANDAS and PANS: Essential Facts for TeachersPatricia Rice Doran, Ed.D.

Student needs and performance may vary widely from day to day/week to week. A plan is needed for acute symptom exacerbationsand less intensive times. Parents of children with PANS/PANDASreport their children benefit from the following behavioral supportsand interventions:•Extended time•Writing accommodations (keyboard, laptop, specially designedwriting tools, graphic organizers)•Math accommodations (calculator, manipulatives)•Frequent breaks, “safe spaces" to use in the event of behavioraldifficulties or acute symptom flares

PANDAS and PANS: Essential Facts for TeachersPatricia Rice Doran, Ed.D.

•Sensory supports (including occupational therapy when needed)

•Adapted or modified tasks, particularly those requiring motor controlor sustained effort

•Actively work to minimize students' stress. Stress can increase anxietyand exacerbate symptoms.

•Advance planning for health-related absences, including home andhospital transitions as well as absences related to appointments andtreatment. Students with PANDAS/ PANS may have frequent absencesand benefit from strong and proactive teacher communication.

Implications for Advanced Practice Nurses When PANDAS Is Suspected: A Qualitative Study Molly McClelland, PhD, RN (J Ped Health Care-2015)

Fear •Parents afraid of

•Violent and dangerous behavior •How incapacitated their kid is•Symptoms returning (PTSD)

•Children afraid of•Symptoms returning (PTSD)•Not being able to think clearly, write or read•Irrational behaviors•Losing friends, not being attend social events•Medical interventions

Frustration•Practitioner’s/Medical community’s lack of understanding •Lack of resources•Lack of compassion•Being blamed for child’s behaviors

Not Being Heard•Medical community not hearing whole story, misdiagnosing, patronizing•Emergency room is ineffective •Psychiatric Units dose medicines too high

Family Experience

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Closing Thoughts

• Kids Can Get Better.• Earlier diagnosis and treatment equals better outcomes• PANDAS/PANS is essentially a spectrum disorder• Not all patients will have all of the symptoms• Symptoms are relapsing and remitting• Create fluid access in and out of services• Be a partner with the family• It takes a whole team• Don’t blame the child for his/her illness• It is Medical. The symptoms are not purely behavioral

Panelists Speak

• Lisa: a parent who has a story to tell

• Melissa, therapist and parent

• Cathy, School Nurse and parent

Lisa’s Story

• 7yo: sudden, complete personality change: extreme phobia of tornadoes, rain; cartwheeling non-stop, hoarding food, wetting the bed, hallucinating pacing, not sleeping, sensory issues

• Rapid strep neg. High dose benzos used which created hallucinations. Removal with major side effects. Blood checked, positive for strep antibodies.

• Over 18 mo. had seen 5 therapists, 2 psychiatrists, a neurologist and 3 pediatricians.

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Lisa’s Story, cont.

• 12 yo: Gardasil shot, 10 days later cellulitis, eyes shut from infection, required surgery. Fears returned, thought her teeth were falling out, appendix was bursting, had chest pain. EKGs, X-rays, Ultrasounds done. Psych eval behind a locked door.

• 15 yo: High anxiety, school refusal. Positive for tic borne diseases (Lyme, Bartonella, Ehrlichiosis), Mycoplasma and POTS (orthostatic), non-specific throat swelling. Tx’d with antibiotics, recovered. Fluoxetine for anxiety, DC’d after high school.

• 19 yo: episodes of anxiety, getting referral for therapy. ? PANS or “normal” anxiety? She always has more anxiety with physical illness.

Melissa Glynn-Hyman, LICSWParent and Therapist for Children with PANS/PANDAS

• Melissa’s story: March 2014, 5 yo son developed sudden onset of irrational fears, separation anxiety (preschool), compulsively confess and tells, questions constantly, hand washing, tics (throat clearing and kicking leg to hand), fearful of choking, baby talk, slurred speech, disconnected socially.Positive rapid throat strep and high ASO titers, started on Azith. by Pedi. 2 weeks later, dx’d with PANDAS at MGH clinic, antibiotics continued. Over 12 mo. had 9 + rapid strep tests, 2 episodes of scarlet fever. Positive for Lyme IgM and Mycoplasma Pneumonia.

Melissa’s Story cont.

Sep. anxiety at school, guidance counselor had to hold him. Difficulty with handwriting, had tics and obsessive thoughts, fatigue, regression and rage.

Younger brother positive for strep 4 x before 1 yo, multiple infections (RSV, ear, sinus, etc.), T and A before 2 yo, 3 Myringotomies (tubes). Behavioral regression, emotionally labile, hand tic, irrational fears. Dxwith PANDAS and Lyme, on antibiotic.

Younger sister: multiple ear infections, low grade night fevers, OCD, emotional lability, OCD, sensory rubbing needs, positive for Lyme.

Melissa went to work at Lyme PANS Treatment Center in Cohasset.

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MelissaWhat Do Parents Need?

• Support, support, support:

Assistance getting child into school, navigating resources for 504’s and IEPs.

Parents are informed about strep in classroom.

Excused absences when there is an outbreak of a communicable infection at school.

Nurse and teachers to note changes in behavior and physical health, not feeling well (fatigue, malaise, stomach ache, headache, etc.)

Be a partner with the family. It takes a whole team.

MelissaImpact on Family

• Sibling dynamics: sibs see and hear everything. Diet rules change, discipline changes. Parents are helpless to stop this.

• Marital Stress: Disagreement of what this is. One parent often bearing more of the weight of the illness/behaviors. Sleep deprived. Financial costs of work loss and treatments.

• Discipline: Very confusing. Discipline does not work or change the child’s behaviors. It often escalates the worst problems.

• Parents need support, not blame. Do not scare or shame them or the kids.

• Diet and lifestyle changes, e.g., gluten free, are hard to manage.

MelissaImpact on Family

• PANS/PANDAS is a “controversial Diagnosis”

• PANS/PANDAS is accompanied by normal fear of mental illness/stigma, esp. in a “normal child”.

• RN can assist the family to understand the medications prescribed and possible side effects.

• Parents are usually fighting an uphill battle. Most people have never heard of it, so not only is their child sick, but the child has something no one has heard of. And there are so many different symptoms happening all at one time.

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MelissaHow Can School Help?

• 504 plan to address neuropsych and medical accommodations:

- Decrease of home work if in a flare. (Sometimes no home work can be done).

- Shortened school day, home or school tutor when ill or catching up.

- Extra time for tests/quizzes. Access to class notes, assistive technologies.

- Frequent breaks if needed.

- Provide a point person where the student can decompress/re-regulate. 

MelissaHow Can School Help?

-Sensory tools: fidget toys, noise cancellation headphones, yoga ball, etc.

- Positive reinforcement in the classroom. Positive rewards only. Take away plans are inappropriate. Neg. discipline escalates affect. Their world is falling apart but they need a safe place where they can be and want to be, even fighting fears that they have left home.

- Watch for bullying. Children with tics or overt OCD are at risk. Educate classroom if child and family allow.

MelissaHow can School Help?

• Be aware that psychotherapy (CBT, ERT) often does not work when acute symptoms are present. They might help when there is a minor flare but child may go back to baseline and need no strategies.

• Accommodations for Compulsions: alter work sequence, ID and substitute less disruptive behavior, timer for transition, computer for erase, space to release compulsions (tap, touch, count, etc.)

• Accommodations to Obsessions: special words/prompts to interrupt obsessive thoughts, allow spell check at times, other interruptive actions

• Accommodations: Anxiety: relaxation, safe space, know it is hard

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Cathy Teal, RN CathyTeal.RN@gmail.com

RN for 44 years

School Nurse 20 +

Pediatric Nurse

Mother of a child with Suspected PANS

Following PANDAS/PANS since 2000

Currently have 3 students with Diagnosed

PANDAS

First diagnosed student is now 23 and successfully in Grad School

Assisted with 504 and IHCP for students

Cathy Teal, RN

• Send home a letter to request to be notified if strep (and other infections) are present in the classroom. Middle School and High School parents are less likely to report this• strep throat• mycoplasma pneumonia/walking pneumonia• Impetigo

• Attendance Plans• Health Plans• Share information about PANS/PANDAS

• Newsletters• Weekly bulletins• Websites• Facebook • PTA/PTO Groups

• Meet frequently with the parents and communicate with the teachers and all who work with student. ie. Gym, Music, Library, Computers, Art, etc.

Cathy Teal, RN

• Send home a letter to request to be notified if strep (and other infections) are present in the classroom. Middle School and High School parents are less likely to report this (see sample below):• strep throat• mycoplasma pneumonia/walking pneumonia• Impetigo

• Attendance Plans• Health Plans

• Share information about PANS/PANDAS • Newsletters• Weekly bulletins• Websites• Facebook • PTA/PTO Groups

• Meet frequently with the parents and communicate with the teachers and all who work with student. ie. Gym, Music, Library, Computers, Art, etc.

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Cathy Teal, RN

• Track illnesses in your Electronic Medical Records• SNAP in Conditions/Alerts Tab• Students are diagnosed at PCP, CVS clinics and Urgent Care• This makes it easier to keep track of their health issues• EMR’s can track Classrooms, time of year, etc.

• Join PANDA/PANS Facebook Pages, Message Boards, Forums

• Purchase PANS/PANDAS reference books

• Print out Posters and display them in your office and general parent information area.

Helpful Things to Do in the Classroom

• Review proper hand washing techniques• Frequent wiping of her desk, chair and common areas with Lysol/Clorox wipes to

avoid illness• Limited sharing of common supplies to avoid illness• Frequent use of hand sanitizer or hand washing (particularly after common

activities) to avoid illness• Consider/review classroom seating arrangements with teacher. • Notification when there are high incidences of illness in the classroom,

particularly strep• Notification to parents in the classroom informing parents that there is a child with

an autoimmune illness and to report illness, especially strep, to the school so the family can be notified.

• Sample letter below

Cathy Teal, RNSample Letter

Dear Parents of _______________ Graders, As you may already be aware, it is school policy to report the type of sickness that your child has when he/she is out with an illness. Thank you to those of you who already do this consistently. The purpose of this letter to request that everyone do this, especially if your child, or anyone else in your family has strep throat. There is a student at our school who has a severe and profound negative reaction if they come in contact with strep. It is important for this family to know if they have come into contact with anyone who may have been exposed to strep throat. ( Add pneumonia, other infections, if you choose).If this occurs, simply let (school nurse name) know as soon as you become aware and she will alert the family. Thank you so much for helping us keep our wonderful school as healthy as possible. Sincerely,

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Cathy Teal, RNKey Points

• PANDAS/PANS is an assault on a child’s brain.

• Unfortunately, the symptoms can look behavioral or like a mental illness….

• It is the BRAIN INFLAMMATION that causes the issues to flare, so typical treatments usually will NOT work as typical treatments.

PANDAS School Daze (Lesson 2: Symptoms At School), 2014-09-04 by Sarah

https://www.pandassucks.com/2014/09/04/pandas-school-daze-lesson-2-symptoms-at-school/

New England PANS/PANDAS Association (NEPANS)

(NEPANS) is a group of parent and medical volunteers focused on raising awareness of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

MISSION• To raise awareness of PANS/PANDAS in our community and beyond

• To support the medical community in their mission to heal children suffering from PANS/PANDAS

• To look for ways to expand the medical care available

• To create opportunities to assist families searching for solutions

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Resources

New England PANS PANDAS Association www.nepans.org

Pandas Networkwww.pandasnetwork.org

PANDAS Physician Networkwww.pandasppn.org

North East Meet Up Groupshttp://nepans.org/resources/northeastmeetupgroups.html

Journal of Child and Adolescent Psychopharmacology Jan./Feb. 2015 and Sept. 2017

Books

PANS, CANS, and Automobiles: A Comprehensive Reference Guide for Helping Students with PANDAS and PANS

Jamie Candelaria Greene, Ph.D., BCET, First Edition Design Publishing, 2016

PANDAS and PANS in School Settings: A Handbook for Educators

Patricia Rice Doran, Ed.D., Editor, Jessica Kingsley Publishers 2017

Saving Sammy

Beth Alison Maloney

Crown Publishers 2009

Childhood Interrupted: The Complete Guide to PANDAS and PANS

Beth Alison Maloney

CreateSpace Independent Publishing Platform, 2013

Books

In a Pickle Over PANDAS

Melanie S. Weiss, R.N.

First Edition Design Publishing, Inc. 2015

A Child’s Introduction to Understanding PANDAS

Elizabeth Gibbs

PANDAS Network 2012

When Your Child Has Lyme Disease: A Parent’s Survival Guide

Sandra K. Berenbaum, LICSW and Dorthy Leland

Lyme Literate Press, 2015

Lyme Brain: The Impact of Lyme Disease on Your Brain and How to Reclaim Your Smarts!

Nicola McFadzean Ducharme, ND

BioMed Publishing Group, 2016

10/31/2017

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References

Is It PANS, CANS or PANDAS? Kathy Bagian, MSN, RN, CSN

School Nurse, March 2015

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients, Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998

Gifted Students and Lyme Disease: What Educators, Counselors, and Parents Need to Know. Patricia Schuler, Ph.D., Gifted Child Today,Vol. 36, Dec. 2012