PANDAS ( Paediatric Autuimmune Neuropsychiatric Disorder associated with group A Streptococcus) is a group of disorders seen in the paediatric population which consist of either tics or obsessive compulsive disorder either exacerbated or brought on by a common bacterial infection called Group A streptococcus (GAS). This infection may present with a sore throat or chest infection.
This group of disorders has been given a International classification of disease (ICD-11) code in the next set of codes to be released.
This group of disorders is thought to occur after the body produces an antibody to fight a common everyday infection. This antibody then goes on to stimulate a part of the brain involved with movement control (or regulation of obsessive compulsive behaviours) which in turn results in the abnormal movement, noise, feeling or compulsion.
PANS (Paediatric acute-onset neuropsychiatric syndrome) describes a clinical syndrome that may be caused by noninfectious or infectious triggers. Proposed diagnostic criteria for PANS include: the sudden onset of OCD or severely restricted food intake, severe neuropsychiatric symptoms (eg, anxiety, depression, emotional lability, etc) or symptoms not better explained by a known neurologic or medical disorder. The key words in this are “sudden onset”. Symptoms appear dramatically and there is a rapid shift in the child’s behaviour.
Rheumatic fever has been a less commonly recognised condition over the past 30-40 years. Part of the diagnostic criteria for rheumatic fever included a condition called “Sydenham’s chorea” or ‘St. Vitus dance” . This was an abnormality of movement which was associated with streptococcal infection. Individuals diagnosed with rheumatic fever were given long term prophylactic penicillin to treat the condition and prevent disease relapse.
Dr Susan Swedo during her research into Sydenham’s chorea realised that there were a sub-group of patients with tics & obsessive-compulsive behaviour that had a sudden onset of symptoms. This was very different to the movements seen with rheumatic fever. Crucially the symptoms had a very rapid pace of onset. The video below shows how this condition has evolved.
Dr Swedo 2014
PANDAS symptoms typically start abruptly, almost as if a switch has been thrown. Symptoms include tics, sleep disturbance, obsessive compulsive behaviour, deterioration in handwriting, eating disorders (including anorexia but the problems appear to be more centred on difficulty in coordinating swallowing), behavioural regression and urinary incontinence. By definition these occur following a streptococcal infection which then results in the stimulation of antibodies which stimulates the part of the brain involved in movement and behaviour regulation (the basal ganglia). Examination of the child reveals a child who is “trapped” or “psychologically burdened”. They may have reduced muscle power and may show abnormal movements.
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is defined by the rapid onset of obsessive–compulsive disorder (OCD) or eating restrictions and comorbid symptoms from at least two of seven categories:
Criteria for diagnosis of PANDAS include:
Examination of the child should include looking at the throat, ears, skin (eg for impetigo or guttate psoriasis),examining the peri-anal area and genitals for infection, checking for a heart murmur and assessing weight and height.
The free downloadable form that we have supplied on this page will allow parents to score their child’s symptoms on a daily basis. You can download this form by clicking on “Patient Information Leaflet” above or by clicking on the following link; PANDAS symptom monitoring chart. This scoring sheet also allows parents to add detail such as whether or not a child is receiving antibiotics or anti-inflammatories. This information is invaluable in assessing the patients that we see using the Children’s e-Hospital on-line service but can also be used to help parents with any health professionals they see. If you need any support in using this tool please conact us at: firstname.lastname@example.org
The latest UK PANS & PANDAS Physicians Network treatment guidelines can be downloaded here:
GP’s may prefer to use the UK PANDAS & PANS Quick Reference Guide for GP’s:
In addition, the Children’s e-Hospital has adapted these guidelines into a user friendly protocol for health professionals:
Please email email@example.com to obtain the password to access the documents (You will need to provide proof of your professional medical status)
Treatment can be divided into several stages which are described below.
Once disease remission has been achieved the antibody level will gradually fall and symptoms will slowly improve unless the immune system is restimulated eg with another infection. In order to reduce the risk of further streptococcal infections, current recommendations include the use of preventative (prophylactic) antibiotics which are given long term to prevent further streptococcal infections.
The Children’s e-Hospital recommends PANS PANDAS UK for parental support. This UK charity have worked tirelessly to raise the profile of these conditions and help direct parents to the right medical resources in addition to providing moral support. You can access their website by clicking on the following link: PANS PANDAS UK
The Children’s e-Hospital has a very active PANS/PANDAS Facebook page where you can find the latest updates on research & treatment: The Children’s e-Hospital PANDAS & PANS Facebook Group
This article has been written to try and help parents in the UK get the best treatment for their child. It must be remembered that this is an evolving disease in the paediatric population and therefore other conditions must be excluded before you embark on a pursuit of a diagnosis of PANDAS or PANS.
If you would like to discuss your child’s diagnosis further or wish to know more about PANDAS & PANS please contact the Children’s e-Hospital admin team at firstname.lastname@example.org