Posted on Leave a comment

Sensory Overload, Poor Habituation and A Brain that is Constantly Surprised

This article by science mag uses the analogy of predictive coding to explore how a mismatch between what the brain predicts might happen with what actually happens can cause the brain to be in a constant state of surprise. It attempts to explain some of the core features of Autism, Sensory Integration differences, poor habituation, focus on detail rather than the big picture and difficulties with social interaction…

“In Ayaya’s telling, her autism involves a host of perceptual disconnects. For example, she feels in exquisite detail all the sensations that typical people readily identify as hunger, but she can’t piece them together. “It’s very hard for me to conclude I’m hungry,” she says. “I feel irritated, or I feel sad, or I feel something [is] wrong. This information is separated, not connected.” It takes her so long to realize she is hungry that she often feels faint and gets something to eat only after someone suggests it to her.”  Read more here…

Posted on Leave a comment

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:

Screen Shot 2019-12-08 at 19.50.03

  • 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

 

Screen Shot 2019-12-08 at 19.37.12
Shared with permission: https://www.nimh.nih.gov/health/publications/pandas/index.shtml

Download your copy from NIMH here.

Screen Shot 2019-12-08 at 19.33.06
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

 

Posted on

The Importance of the Sensory Environment for Premature Babies

Read more about one family’s journey through neonatal intensive care and what they have learned about the impact of the sensory environment on the developing nervous system of premature babies in this blog post By Anna Lee Beyer

 

toddler s left foot

Posted on

Christmas Themed – Calm Down Glitter Bottle Timer

Thanks so much for this beautiful, simple idea sent to us by one of our families.

Have you tried making and using a glitter-filled calm down bottle timer to help your little ones? It’s easy to put a Christmas theme into them by using festive colours and adding seasonal themed sequins or beads.

With so many versions on the internet, here is a blog post from my Crazy Blessed Life with tried and tested instructions to make your own. While Mama OT explains how the bottles can work by aiding self-regulation http://mamaot.com/sensory-calm-down-bottle/

And a Christmas themed jar from Teaching Mama

Christmas Sensory Bottle

Don’t forget there is still time for you to win a copy of Love Jean by entering our Christmas time book give away. Share your Christmas themed sensory ideas with our community… by leaving a comment on one of our Christmas themed blog posts or on our facebook page … before the 15th December 2018

love jean book

 

 

 

assorted color sequins

Posted on

Helping Autistic Children Manage the School Christmas Play

Christmas time in school can be difficult for children with additional needs, changes in routine and new experiences can be hard to manage. Here is some advice from Its a Tink Thing with ideas for helping autistic children to be included in the Christmas play.

https://itsatinkthing.com/how-to-help-an-autistic-child-to-manage-the-school-christmas-play/

Christmas photo 1495318_541193059305224_1470605699_o