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PANDAS and PANS Update

Thank you to everyone who has messaged me about my earlier. article about PANDAS and PANS for more evidence to support the earlier post.

Research Evidence:

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  • JCAP – Clinical Management of PANS:

    • Part 1 – Psychiatric and Behavioural Interventions – click to view

    • Part 2 – Use of Immunomodulatory Therapies – click to view

    • Part 3 – Treatment and Prevention of Infections – click to view

  • JCAP – Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome – click to view
  • IJPO – Improvement of Psychiatric Symptoms in youth following resolution of Sinusitis – click to view

from https://www.panspandasuk.org/resources

PANS PHYSICIAN’S NETWORK TREATMENT GUIDELINES

These guidelines were first published in May 2018 following several meetings between the PANS Physicians’ Network UK (PPNUK) and the Charity PANS PANDAS UK.  Based on the US treatment guidelines originally written by the US PANDAS Physicians’ Network, these guidelines have been modified to adapt to UK medical practice,  GP’s are strongly encouraged to start treatment and investigations early as early treatment is likely to improve the long term outcome of these patients.

 

“There is gradually accumulating evidence that there are some children who experience sudden onset of a neuropsychiatric disorder (usually obsessive-compulsive disorder (OCD) or tics) following a Group A beta-haemolytic streptococcal infection (GABHS). The acronym PANDAS was first cited in 1998 to describe this group of patients.[1]However, neurological sequelae of streptococcal infection have been well recognised (eg, Sydenham’s chorea described by William Osler in 1894).[2]

Doubt remains about the aetiology of the condition and whether it can be considered an independent disease entity.[3]

More recently the term PANS (paediatric acute-onset neuropsychiatric syndrome) has been suggested, as it captures both the sudden onset and uncertainty about the aetiology.[4]”

from PANDAS Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection

 

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Shared with permission: https://www.nimh.nih.gov/health/publications/pandas/index.shtml

Download your copy from NIMH here.

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Swedo et al 2012 “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)”

Read the full article; “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)Swedo et al 2012” here.

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

PANS was introduced in 2012 by Dr. Susan Swedo in the paper From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).

The PANS Criteria
PANS is a clinical diagnosis. The following is the “working criteria” as listed Dr. Swedo’s paper on PANS:

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 lability 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’s chorea, systemic lupus erythematosus, Tourette disorder or others.

PANDAS CRITERIA

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.

When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).

The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. Below is the symptom criteria for PANDAS. Additional symptoms may be present.

A clinical diagnosis of PANDAS is defined by the following criteria:

  • Presence of significant obsessions, compulsions, and/or tics
  • Abrupt onset of symptoms or a relapsing-remitting course of symptom severity
  • Pre-pubertal onset
  • Association with streptococcal infection
  • Association with other neuropsychiatric symptoms

from http://pandasnetwork.org/medical-information/

Sensory Issues and PANDA’s: Read more here

https://latitudes.org/forums/topic/14571-sensory-issues/

Interestingly no one asked for evidence of Sydenham’s Chorea, which has been well documented for much longer. Perhaps because it has a very physical presence that is clinically easier to diagnose, especially as the condition progresses to full-blown ataxic movement patterns, as well as the neuropsychiatric symptoms.

from: https://patient.info/doctor/sydenhams-chorea

In the 1930s, if a doctor saw a patient with chorea, especially if the patient were a child or young woman, it was a reasonable assumption that the diagnosis was Sydenham’s chorea. In western societies today, such a presentation is unlikely to be Sydenham’s chorea and considerable thought must be given to the differential diagnosis. The time course of the chorea is useful diagnostically: most previously healthy children with an acute or subacute chorea have an autoimmune aetiology[17]. Additional causes of childhood choreas include:

  1. Other autoimmune causes, such as seen in systemic lupus erythematosus.
  2. Genetic causes*
  3. Athetoid cerebral palsy.
  4. Drug-induced causes – metoclopramide, phenothiazines and haloperidol are the most important.
  5. Primary and metastatic brain tumours affecting the basal ganglia.
  6. Metabolic – bilirubin encephalopathy and toxins, especially carbon monoxide, manganese and organophosphate poisoning.

*Genetic Causes can include:

  • Benign hereditary chorea starts in childhood and is a non-progressive chorea. Inheritance is usually autosomal dominant, although rare cases of autosomal-recessive and X-linked inheritance have been reported[18].
  • Wilson’s disease is an autosomal-recessive disorder of copper metabolism.
  • Ataxia telangiectasia and other related conditions.
  • Huntington’s disease presents most often between the ages of 35 years and 45 years but it can be younger, especially if inherited from the paternal line. There is usually but not invariably, a family history. A juvenile form exists that should be seen as a variation of the normal form and not a distinct entity[19].

see more here: Rapid onset sensory reactivity, movement difficulties, tics, mood changes and reduced attention may be PANDAS or PANS

 

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CPD: Understanding and Applying Trauma-Informed Approaches Across Occupational Therapy Settings

AOTA has really helpful and supportive articles right now – promoting the best clinical practice, with an emphasis on participation in occupation.

This article is particularly pertinent to OT’s using ASI theory and practice to create therapeutic environments supporting and scaffolding participation in daily life for those with trauma.

Read the full article here.

 

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CPD Update: Neurodevelopmental Soft Signs: Implications for Sensory Processing and Praxis Assessment—Part One

An interesting read, this AOTA CE Article links sensory integration and processing difficulties and higher functions linked to occupation and participation. 
A table in the article links types of neurodevelopmental soft signs (NSS) in Occupational Therapy evaluation and underlying brain areas implicated in the literature, commenting that
“Integrating clinical observations of NSS with advanced brain-based research expands our understanding of the sensorimotor scaffolding that leads to higher functions of behavior organization, communication, and cognition.”
To access/buy a copy you can find out more here:
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Celebrating International Women’s Day 2019

This international women’s day, ASI wise are remembering and celebrating Dr. A. Jean Ayres a neuroscientist, educational psychologist and occupational therapist who pioneered the concepts of sensory integration and its impact on human learning and development. She wrote books, papers and research articles, mentored therapists and offered pioneering therapy to children, inspiring therapists over the globe to take her work and research, develop, teach and use it to support countless children and adults across their lifespans to live their best possible lives.

Here’s to all the amazing therapists inspired by one woman’s revolutionary insight!

International womens day 2019

 

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Choosing Wisely ® and ASI – a fantastic initiative from AOTA – it got me thinking about why people think sensory is easy and just anyone can do it.

Just like a parent can decide a child has a cold and needs Calpol, a sensory rich home environment can help support development. However just like a child may need a Dr, Dentist or other specialist if they have a more serious illness, what some people need is specialist intervention.

Sensory Integration therapy requires years of training, first just to become a therapist and then the advanced training needed to accurately assess, develop a personalised intervention plan and then carry out the intervention. We might all know when tonsils need removing, but few of us would do it at home. Telling someone about how tonsils get removed or how sensory integration happens is very different to actually doing it, and doing it safely and so that the outcome is as expected. Sensory integration therapy is not just about swinging on a swing or bouncing on a ball – it is about so much more. And is definitely not about just about wearing headphones and having a bouncy cushion.

The superb article from AOTA’s CHOOSING WISELY programme – see link below – got me thinking. I get weekly emails from people offering to treat other people’s children without training, offering Sensory Profile assessments by mail from a questionnaire when they are not even a therapist.

Share this blog and have interesting discussions with clients, colleagues and line managers. As relevant here in UK and Ireland as in US. This really confirms what we teach in our modules and promote as an organisation; including the best standardised norm referenced tool currently at our disposal – the SIPT. No or limited assessment waters down efficacy. Standardised assessment (when possible) structured clinical observations and thorough clinical reasoning using a clear process are imperative. Data driven decision making.

https://www.aota.org/AboutAOTA/Membership/Tools/Periodicals/choosing-wisely-sensory.aspx