1h 35 min
Living with PANs and PANDAS Ulysses Neuro Podcast
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- Ciencia
In this new episode of the Ulysses Neuro Podcast we spoke with Audrey, Maria and Matty, to give us an insight into what it is like as a parent living with children affected by PANS and PANDAS.
PANS, standing for Pediatric Acute-Onset Neuropsychiatric Syndrome is an umbrella term that covers a group of disorders, one of which is PANDAS, standing for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANS and PANDAS are complex system wide conditions that are characterised by the sudden, ‘overnight’ onset of neuropsychiatric symptoms in children, which may include obsessive-compulsive disorder, tics, anxiety, food restriction, aggression and cognitive changes including decline in academic ability. Physical symptoms like sleep disturbances and urinary problems may also be present.
PANS and PANDAS are little known and poorly treated, and there is currently no cure and a lack of research on the disorders and the associated symptoms. The diagnostic process is complex, and very often the disease is overlooked by the medical community resulting in a very long and complicated journey for the families affected.
Thank you to Audrey, Maria and Matty for sharing their experience with us.
Below are some resources for further information and support on PANS/PANDAS, along with those that have been mentioned throughout the podcast.
PANS PANDAS UK Foundation: https://www.panspandasuk.or
Facebook support group (Ireland) : https://www.facebook.com/PandasIreland/
Neuroimmune Foundation: https://neuroimmune.org/ - resources for medical professionals.
British Paediatric Neurology Association released a 2021 consensus statement on childhood neuropsychiatric presentations with the aim of helping members provide care based on the most accurate and up to date evidence for children with acute neuropsychiatric presentations, including where Paediatric Acute Neuro-Psychiatric Syndrome (PANS) and Paediatric Acute Neuro-Psychiatric Syndrome associated with Streptococcal Infection (PANDAS) are considered.
The statement was updated in 2023 to highlight that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation. It signposts clinicians to existing international peer-reviewed treatment guidelines. https://bpna.org.uk/?page=pans-pandas
Aspire: https://aspire.care/ - resources tailored to the audience (booklets for schools, booklet for docs).
Peer reviewed article: https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g
Caregiver burden index: https://aspire.care/what-is-pans/caregiver-experience/
My kid is not crazy documentary: https://www.youtube.com/watch?v=WJQT9-cQwIw
In this new episode of the Ulysses Neuro Podcast we spoke with Audrey, Maria and Matty, to give us an insight into what it is like as a parent living with children affected by PANS and PANDAS.
PANS, standing for Pediatric Acute-Onset Neuropsychiatric Syndrome is an umbrella term that covers a group of disorders, one of which is PANDAS, standing for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANS and PANDAS are complex system wide conditions that are characterised by the sudden, ‘overnight’ onset of neuropsychiatric symptoms in children, which may include obsessive-compulsive disorder, tics, anxiety, food restriction, aggression and cognitive changes including decline in academic ability. Physical symptoms like sleep disturbances and urinary problems may also be present.
PANS and PANDAS are little known and poorly treated, and there is currently no cure and a lack of research on the disorders and the associated symptoms. The diagnostic process is complex, and very often the disease is overlooked by the medical community resulting in a very long and complicated journey for the families affected.
Thank you to Audrey, Maria and Matty for sharing their experience with us.
Below are some resources for further information and support on PANS/PANDAS, along with those that have been mentioned throughout the podcast.
PANS PANDAS UK Foundation: https://www.panspandasuk.or
Facebook support group (Ireland) : https://www.facebook.com/PandasIreland/
Neuroimmune Foundation: https://neuroimmune.org/ - resources for medical professionals.
British Paediatric Neurology Association released a 2021 consensus statement on childhood neuropsychiatric presentations with the aim of helping members provide care based on the most accurate and up to date evidence for children with acute neuropsychiatric presentations, including where Paediatric Acute Neuro-Psychiatric Syndrome (PANS) and Paediatric Acute Neuro-Psychiatric Syndrome associated with Streptococcal Infection (PANDAS) are considered.
The statement was updated in 2023 to highlight that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation. It signposts clinicians to existing international peer-reviewed treatment guidelines. https://bpna.org.uk/?page=pans-pandas
Aspire: https://aspire.care/ - resources tailored to the audience (booklets for schools, booklet for docs).
Peer reviewed article: https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g
Caregiver burden index: https://aspire.care/what-is-pans/caregiver-experience/
My kid is not crazy documentary: https://www.youtube.com/watch?v=WJQT9-cQwIw
1h 35 min