“Our results motivate a paradigm shift to challenge how ASD, ADHD, and OCD are currently defined, diagnosed, and treated. In particular, this paper adds to the evidence that these diagnoses may not exist as uniquely-defined diagnostic constructs, and highlights the need to discover other groupings that may be more closely aligned with biology and/or response to treatment.”
So, this study by Kushki et al 2019 is by no means simple. However, the results support our clinical experience of the overlap and common features seen in practice. We see similar overlap is the assessment data we gather, particularly when we SIPT our clients with these diagnoses. The study uses state of the art technology and research methodologies, statistical calculations, and techniques I had never heard of. I had to look them up. However, the research appears to support what we see in clinical practice. I look forward to reading more by these researchers in Canada.
“…we used a data-driven, diagnosis-agnostic approach to examine overlap across three neurodevelopmental disorders (ASD, ADHD, and OCD)…we observed that differences in the domains primarily affected in these disorders may exist along a continuum that includes typical development.”
“The majority of the data-driven clusters contained participants from multiple diagnostic categories, highlighting shared phenotypes and neurobiologies among the diagnostic groups.”
“Social difficulties and inattention are commonly reported as shared features of ASD, ADHD, and OCD….our results support the emerging recognition that the existing behaviorally-defined diagnostic labels may not capture etiologically, biologically, and phenomenologically homogeneous groups.“
“…our results are consistent with the notion that that the ASD-like features, and to some extent inattention traits, exist across a continuum that includes typical development”
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.However, neurological sequelae of streptococcal infection have been well recognised (eg, Sydenham’s chorea described by William Osler in 1894).
Doubt remains about the aetiology of the condition and whether it can be considered an independent disease entity.
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.”
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.
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.
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
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.
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. Additional causes of childhood choreas include:
Other autoimmune causes, such as seen in systemic lupus erythematosus.
Athetoid cerebral palsy.
Drug-induced causes – metoclopramide, phenothiazines and haloperidol are the most important.
Primary and metastatic brain tumours affecting the basal ganglia.
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.
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.
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.
“Early trauma is stored in the body via the senses, this is why therapy through the senses is effective.”
Smith, K BPD and SI 2004
Occupational Therapists are ideally placed to work through play and via the senses to promote the development of healthy neurological pathways and structures; impacting the development of sensory motor skills and abilities that underpin our ability to move, learn, play, develop, communicate, think and process emotions.
Sensory integration is integral to the process of healthy development ‘when the functions of the brain are whole and balanced, body movements are highly adaptive, learning is easy and good behaviour is a natural outcome’
They can do this with clients who are very young, or those who are adults with childhood trauma, who often find talking therapies very hard to engage with as the trauma memories are stored before language has developed, so are instead stored in the body and via the senses.
These young people do need trauma-informed schools, but this is not enough! The problem with whole school approaches to trauma is that for these children whole school strategies are not individualised and personalised and as such, are not specifically targeted. Specialist assessment and intervention is needed for these young people to reduce the impact of trauma on their young plastic brains, still in development.
Postgraduate education in Ayres’ Sensory Integration theory and practice alongside undergraduate education in infant and child development means that occupational therapists are ideally placed to address the sensory-motor needs of looked after children who have often been subjected to trauma in utero and early childhood.
Ayres’ Sensory Integration is a theory that suggests that brain “maturation is the process of the unfolding of genetic coding in conjunction with the interaction of the individual with the physical and social environment. As a result of experience, there are changes in the nervous system.”
Spitzer and Roley 1996
Sensory qualities of the environment can positively or negatively interact with function and development.
Schneider et al, 200
Occupational Therapists working in this area are able to use a discreet but comprehensive range of skills and resources within their scope of practice to offer direct one to one sensory integration – based intervention. These may be with the individual child, while also supporting foster and adoptive families, and typically includes parent participation in therapy. Occupational therapists will also offer parent and family education and work alongside schools and other organisations via a consultation model, offering education, in-service training, supervision for staff.
“Adopted children who have suffered traumatic early experiences are “barely surviving” in the current high-pressure school environment and need greater support if they are to have an equal chance of success, a charity has said.
They are falling behind in their studies because they are struggling to cope emotionally with the demands of the current education system which “prizes exam results at the expense of wellbeing”, according to a report from Adoption UK.”
The development of Occupational Therapy care pathways for children, adolescents and adults with trauma is increasing, as the role of Occupational Therapists in this area is increasingly being recognised.
‘Sensory Integration sorts, orders and eventually puts all the sensory inputs together into whole brain function.’
What emerges from this process is increasingly complex behaviour, the adaptive response and occupational engagement.
Allen, Delport and Smith 2011
You can read more about work in this area by following these links:
1. May–Benson, T. A. (2016). A Sensory Integrative Intervention Perspective to
Trauma–Informed Care. OTA The Koomar Center White Paper. Newton,
3. Werner, K. (2016) “Occupational Therapy’s Role in Addressing the Sensory Processing Needs of Young Children with Trauma History” Entry-Level OTD Capstones. 8. http://commons.pacificu.edu/otde/8[accessed Jul 01 2018]
Where is neuroscience going in the future, how will we get here? Sam Rodriques talks to us about problems with current research methods, and why outcomes for clients haven’t changed in years. He proposes what the year 2100 might look like from the weather, to vacuum cleaners and finally what we will know more about Alzheimer’s and how we got there using more up to date risk-free methods.
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