Dr Yana Wengel is an associate professor at Hainan University. Yana takes a critical approach to tourism studies; her interests include volunteer tourism, tourism in developing economies and nature-based tourism. Her dissertation examined the social construction of host-guest experiences in volunteer farm tourism. Her current projects are focused on nature-based tourism and leisure and travel experiences of patients with an eating disorder. Yana is interested in creative methodologies for data collection and stakeholder engagement. She is a co-founder of the LEGO® SERIOUS PLAY® research community.
We will be hosting a Q & A session tonight. Come and join us to hear about Sensooli and Chewigem products. We will be joined tonight on the call by Jenny McLaughlan and Loz Young, who will be telling us more about Chewigem and their new initiative Sensooli . They are keen to hear therapist feedback about their products and how this relates to our practice;including what we might like to know more about. For more information please see https://chewigem.com/and their new spacehttps://sensooli.com/.
Please post any questions before the session to the ASI in Practice Telegram Group or email through to firstname.lastname@example.org.
This is an open evening session, so please also do bring any others questions or chat about anything related to ASI.
“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.