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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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Research into Practice: A study of safety and tolerability of rotatory vestibular input for preschool children

The answer to a question on SI4OT, a FB group for OT’s curated by our social media team, includes this interesting article.

This study was focussing on the vestibular system, and the researchers tried to work out the exact amount of vestibular input needed in therapy. The results strongly suggest that it is very individualised and requires direct therapist observation to know. This is exactly in line with Ayres’ teachings. There is no exact amount that can be prescribed

A study of safety and tolerability of rotatory vestibular input for preschool children

The use of sensory input to support function, health and wellbeing is an art and a science.

The science is knowing for instance that habituation of tactile input to Ruffini nerve ending is usually fairly rapid – eg light touch as we put arms in shirt sleeves while habituation to pain receptors will vary a lot and maybe ongoing after tissue damage we can’t always see.

The art is that our response to sensory input to sensory systems will vary greatly and is very individualised. This response is not just linked to immediate registration and perception of the input – meaning and memory need to be considered too.  Think about happy smells and songs that stay in your head all day. Think too about the response to trauma when a person smells their abuser’s perfume.

There is no recipe for how much to give and when. This is the art and science of ASI. So many factors impact on what a person needs and when to have an adaptive response.

This is why sensory input is not just something you can prescribe someone by saying;

“Give Jane 20 mins on a swing 3x a day” 

gray swing

Essential to practice is the person’s response to sensory input – Do they have an adaptive response?

“Ayres (1972b) described the adaptive response as central to praxis intervention. Adaptive responses are purposeful actions directed toward a goal that is successfully achieved, and the production of adaptive responses is thought to be inherently organizing for the brain. Ayres (1972b, 1985) further emphasized that SI intervention was a transaction among client, task, and environment.”

Bundy, A. and Lane, S. [2019], Sensory Integration Theory and Practice, 3rd Edition, [Philadelphia]. Available from: FADavis.

Watching and seeing this response to input, alongside feedback from the parents/family/person is what we do to understand each person’s unique responses and pattern. However, knowing and remembering that many things can impact on this, day to day and even minute by minute is essential. 

 

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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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What is Ayres’ Sensory Integration Therapy?

At ASI Wise, to avoid confusion, we use the term sensory integration and processing difficulties. Different terms are used in different places to describe sensory integration difficulties. Some therapists may use sensory processing difficulties instead. Some may even use sensory processing disorder.

We currently have a robust test,  the SIPT, that allows us to describe sensory integration difficulties and reference research evidence to interpret the unique scores and pattern of scores that the child gets across 17 test items. We can use this data to inform our clinical reasoning, create a hypothesis about what sensory difficulties are contributing to participation challenges in everyday life. We set goals, plan and deliver the intervention, Ayres’ Sensory Integration Therapy measuring therapy outcomes. This is best practice.

“Active, individually tailored, sensory motor activities contextualised in play at the just right challenge, that targets adaptive responses for participation in activities and tasks.”

ESIC Schaaf 2019

Core to the practice of Ayres’ Sensory Integration is a central belief in the ‘adaptive response’.

“Ayres (1972b) described the adaptive response as central to praxis intervention. Adaptive responses are purposeful actions directed toward a goal that is successfully achieved, and the production of adaptive responses is thought to be inherently organizing for the brain. Ayres (1972b, 1985) further emphasized that SI intervention was a transaction among client, task, and environment.”

Bundy, A. and Lane, S. [2019], Sensory Integration Theory and Practice, 3rd Edition, [Philadelphia]. Available from: FADavis.

Ayres’ Sensory Integration assessment and therapy is typically post-graduate education for Occupational Therapists, Physiotherapists and Speech and Language Therapists. Please check that your therapist has ASI Education that meets level 2 education standards as recommended by ICEASI.

For more information about programmes offering Certification in Ayres’ Sensory Integration across the globe, please visit www.cl-asi.org.

 

Thank you Saša Radić – Kabinet aRTisINCLudum aRTis INCLudum for sharing these.

Read “Occupational Therapy Interventions for Children and Youth With Challenges in Sensory Integration and Sensory Processing: A School-Based Practice Case Example”  – one young person’s story from AJOT May 2019 here. [Frolek Clark et al 2019].

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Workshop: Ayres’ Sensory Integration for Health and Wellbeing

Our two day workshop is a “great opportunity to reflect on clinical practice and learn new skills”. Find out more about the application of Ayres’ Sensory Integration beyond childhood to support health and wellbeing.

We can also offer 2 or 3 day onsite bespoke training and consultation for your organisation to support the development of sensory integration informed care pathways.