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PANDAS and PANS Sensory Integration and Processing Challenges

a displeased girl screaming in anger

PANDAS and PANS Sensory Integration and Processing Difficulties

Sensory Systems:
Vestibular processing deficits, often low PRN
Poor postural control especially antigravity extension
Can slouch, slump – extension against gravity is tricky and tiring
Likes to move and not stop/fidgeting
Can have low levels of alertness when not moving
Scared of the dark without visual input to support spatial understanding
Altered spatial awareness
Poor grading of force
May appear ‘low toned’ – but normal Beighton Scale
Poor self-awareness – spatial; position in space and body awareness
ARFID and picky eating | often poor tactile registration and poor modulation
Super sensitive to some tastes
Altered temperature perception
Delayed cues re ill, nauseous, hungry, full or needing toilet
Hyper-responsivity to some textures and light touch eg certain fabrics/textures
May dislike light touch; skin, hair, tooth and nail care can be tricky
Dislike being touched or held when not on own terms
Slow or under-responsivity to pain,
Hyper-responsivity in far senses; smell, vision and hearing

The dyspraxic patterns seen can include;
Often bumping into things and people
Difficulty playing with manipulating tools and toys
Difficulty learning new/novel movement/motor skills
Fine motor co-ordination difficulties e.g., handwriting, bilateral co-ordination, poor tool use
Speech praxis difficulties include stutter, slurred words, poor pronunciation and timing
Ideation, planning and execution can all be affected.

Emotion Regulation
Rage
Anger
Irritability
Poor frustration tolerance
Difficulties with co and self-regulation
Poor self-awareness – emotional lability is common
Tearful one moment, raging the next 0-100 in 3 seconds

Executive Function
Poor processing speed
Multi-tasking is hard
Poor timing and sequencing
Poor concentration and focus
Slow to perform tasks
? observed difficulties with language processing
? observed difficulties with more complex and abstract problem solving that is age-appropriate

Fatigues easily and needs lots of reset time
May go ‘off legs’
Looks like have regressed

May need much parental encouragement and support
Lose resilience to trying new things
Low self-esteem

Older children
Self-loathing and disgust at self
Extreme fear and losing control of agency over the world
Awareness of personality change and burden on parents and siblings

[list developed by Kath Smith OT 2014 – 2021]

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Get moving and have fun over the festive season

Make sure you get your body moving to stay warm and get in the Christmas spirit.

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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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Why the vestibular system is essential to participation in occupation.

vestibular input

Our vestibular system is amazing. So many people don’t even know what they do until it isn’t working – like when someone has vertigo, when even getting out of bed becomes impossible.

Most people have no idea how important it is and how much it influences everyday life.

The vestibular system is located in the inner ear, near the cochlea (the hearing organ of the ear). It tells us about how our head is moving through space. It can tell us about exactly how our head moves, detecting movement in any plane. It tells us if we are still, speeding up or slowing down, .and if we are moving in circular movements of straighter lines.

The vestibular system does and detects gravity. It tells us which way is up and which ways is down. The information from the vestibular system is used by the brain to inform all kinds of things, from helps us balance, supporting our and helping us keep images we look at stable, a skill we need for reading and driving! When it doesn’t work well we can have subtle problems or some that are more impact; making it hard to stand or sit up straight, know when we are or are not moving, keep objects in the distance still, even if we are driving, moving or jumping about.

You can read this great explanation of the vestibular system and how it works to help; at OT toolbox.

 

 

Check out this amazing video made by Astronaut Tim Peake during his time on the international space station, where he experiments with how the vestibular system is affected when in microgravity.

Tim’s brain has adapted to his environment so that the messages from his vestibular system no longer make him feel dizzy or sick.

 

Read more here:

Trigeminal, Visceral and Vestibular Inputs May Improve Cognitive Functions by Acting through the Locus Coeruleus and the Ascending Reticular Activating System: A New Hypothesis.

 

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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.