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The importance of a comprehensive assessment

Thank you to the families who gave consent and our secret blogger OT for this contribution.

“A little while ago, two mums approached me and both asked about assessments for their children. Both were young adults, academically highly able and struggling with their self-organisation and motor skills.

Both young people consented to an assessment and completed, through self-report, the Adult/ Adolescent Sensory History (AASH) questionnaire. They were also assessed with the Sensory Integration and Praxis Test (SIPT). The SIPT is a standardised assessment with normative data for ages 4 through 8 years, 11 months. On this particular assessment tool, sensory integration and processing skills scores plateau at around this age, though the test is still informative for people beyond this age, who should have achieved.

The young lady assessed has a diagnosis of social anxiety and has low confidence, while the young man is quite a confident character. She has a history of bumps, trips and spills, and will tell anecdotes of these with great humour; while he prefers to focus on what he does well in conversation.

I love the AASH, the reports it gives highlight each sensory system, differentiate between discrimination and modulation difficulties and addresses motor planning, sequencing and social/ emotional aspects of sensory integration and processing needs.

It uses clear, non-patronising language and activities appropriate to adults and adolescents. It shows up really clearly a person’s (or their caregiver’s as necessary) perception of their sensory integration and processing needs and how these affect their day to day life. In this instance, the young lady highlighted many sensory processing needs.

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The young man reported almost no difficulties, his only score in the primary sensory systems section was mild proprioceptive difficulties. When questioned as to the accuracy of his answers, he tended to reply “well, nobody likes that, do they?”

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Having scored the AASH checklists, I completed a SIPT with each person. The SIPT is a battery of 17 tests which assess a person’s sensory integration and processing including perceptual-motor skills through tasks with standardised administration and normative data against which to compare an individuals test results. Guess which person showed more significant difficulties in the direct assessment? 

On the SIPT assessment scores between -1 and +1 standard deviation are considered typical, above +1 are strengths and scores below -1 are of clinical significance and require support and will benefit from direct intervention.

The exception to this being Post Rotatory Nystagmus in which a low (below -1) or high score (above +1) indicates significant difficulty inhibiting response to vestibular information and often relates to a low Standing and Walking Balance score.

Here are the young lady’s SIPT results:

 

 

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Definite movement, balance and body awareness difficulties but also some areas of significant strength, particularly around her visual skills and imitation, which she uses to compensate for her body awareness difficulties.

Here’s the young man’s chart:

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Strong visual skills, compensating for significant challenges in the other areas.

This experience taught me so much. From the AASH scores, I was expecting the young lady to have much more problems in the SIPT than the young man, their conversation about their lifestyles confirmed this expectation. Still, then the assessment showed so clearly how much of that was related to confidence.

An evaluation based solely on checklists is not enough. It tells you what a person perceives to be their difficulties, guides the direction of evaluation and adds experiential evidence to the overall assessment.

A good questionnaire is evidence-based and norm-referenced, but it always needs to be triangulated with direct observation and where possible structured and standardised assessment. These tools can tell you so much about the respondent’s confidence and resilience and what they find easy or difficult in day to day life. But I have learned it is a mistake to rely upon one alone when assessing somebody’s sensory integration and processing skills and needs”.

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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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Research for Practice: Sensory Integration and Dyslexia.


Ayres’ published her research findings, making a case for emerging patterns of sensory integration dysfunction including;   

  • developmental dyspraxia – this pattern linking motor planning difficulties with deficits in tactile perception
  • difficulties with integration of both sides of the body; poor right-left discrimination, difficulties crossing the midline, and  reduced bilateral motor coordination – impacting on posture and postural control, thought to related difficulties processing vestibular input 
  • visual perception, form and space perception deficits impacting on visual-motor functions
  • difficulties with visual figure-ground discrimination
  • deficits in auditory and language functions.
  • tactile defensiveness and related sensory reactivity difficulties impacting negatively on attention 

A key feature of Ayres’ Sensory Integration is the adaptive response;  “an adaptive response is a purposeful, goal-directed response to a sensory experience … play consists of a series of adaptive responses that make the sensory integration happen. In turn, as sensory integration develops, better organization and more complex skills are possible” Ayres 2005.

In 2013, Viana et al reported that children with dyslexia show poor performance and variability while relating visual and somatosensory information. Children with dyslexia showed less coherent and more variable body sway;  suggesting difficulties in multisensory integration from sensory cues coming from multiple sources.

 

man in brown jacket holding a book

Studies with adults and children found that there is reduced neurophysiological adaptation in adults and children with dyslexia. In 2016, Perrachione et al published research suggesting that people with dyslexia are likely to have differences in sensory integration and processing, noting significantly reduced adaptation to speech from a consistent voice and less adaptation to the repetition of words, objects, and faces. They provide evidence to support the hypothesis that reading skills in dyslexia are related to the degree of neural adaptation.

In 2017 Wandel and Le confirmed the importance of the effective processing of multiple sensory inputs, including successful sensory integration for competent reading. 

“Successful reading involves the ability to efficiently integrate visual signals with the sounds of speech and the language system; thus, diagnosing the reading circuitry requires testing the cortical and white matter regions that carry reading information from the visual, auditory, and language systems. Reading impairment can result from problems within neural circuits that are used for multiple purposes, not uniquely reading (Rayner et al., 2012, Seidenberg, 2017). Hence, we advocate assessing the circuitry broadly, not just portions that are highly specialized for reading.”

In clinical practice, some children with sensory integration difficulties benefit more from the use of coloured overlays. Research from Kriss and Evans (2005) suggests that 

“Children with dyslexia seem to benefit more from coloured overlays than non‐dyslexic children. MIS and dyslexia are separate entities and are detected and treated in different ways. If a child has both problems then they are likely to be markedly disadvantaged and they should receive prompt treatments appropriate to the two conditions. It is recommended that education professionals as well as eye‐care professionals are alert to the symptoms of MIS and that children are screened for this condition, as well as for other visual anomalies.”

Read the full article: The relationship between dyslexia and Meares‐Irlen Syndrome

Read more here:

Dyslexia link to eye spots confusing brain say scientists.

Dyslexia and Sensory Processing, is there a link?

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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: