In the Long Covid Kids Support Services we see a significant number of children with symptoms consistent with a condition called Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) following COVID19 infection. Many have been diagnosed by their healthcare providers, but sadly, many struggle to achieve recognition, a diagnosis or any treatment at all.
PANS is not a rare condition but it is rarely identified, rarely researched and rarely treated appropriately. With a new influx of children presenting with PANS during the pandemic, awareness and research will be fundamental to the health and wellbeing of the children and adolescents now living with Long Covid and PANS.
Read on to find out more about the symptoms, causes, diagnosis and treatments.
This blog is a living resource and will be updated and added to as needed.
What is Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS)?
Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is an inflammatory brain disorder. It occurs in the wake of an infection, when a child’s immune system responds inappropriately and mistakenly creates subtle inflammation within the brain. Most commonly affecting children, this condition causes a wide range of physical and mental health symptoms.
A number of infections are known to trigger PANS such as influenza, hand, foot and mouth disease, chicken pox, pneumonia and, more recently, coronavirus (COVID-19).
One of the diagnostic criteria of PANS is its abrupt onset, although some parents/caregivers report a less dramatic onset with earlier ‘soft signs’. Children with PANS can change dramatically in personality and behaviour almost overnight which is traumatic for both the child and their family.
Very often the connection is not made between the triggering infection and the ensuing PANS symptoms. Recovery from the initial infection is likely to occur as expected, with parents and carers breathing a sigh of relief and carrying on with life as normal. However, with PANS, at some point in the days or weeks after recovering from feeling poorly, the affected child may suddenly present with overwhelming symptoms such as severe anxiety, mood and behavioural changes, OCD, tics, food restrictions and sleep disturbances.
It is important to be aware that some children with PANS triggered by COVID19 infection may not be easily identified, particularly if they have experienced an asymptomatic COVID-19 infection.
What does PANS look like in real life?
Symptoms of anxiety may appear as sudden severe separation anxiety, irrational fears, or panic episodes. Children who may previously have been happy to play independently might begin to fear being in a room alone, and start to refuse to attend school.
Obsessive-compulsive behaviours may be evident through contamination fears (apparent in a constant need to wash hands for example), reassurance-seeking, perfectionist behaviours or asking the same question repeatedly.
Motor abnormalities such as tics are common in children with PANS. This may be observed as repeated blinking, shrugging of shoulders, bending of the neck to one side, or any number of other repetitive movements. Another motor abnormality experienced with PANS PANDAS is a marked deterioration in hand-writing, very often with writing slanting off to one side of the page. Tics may also be vocal.
Sensory sensitivities (to do with hearing, touch, sight) may become a problem. Many children find it difficult to wear clothes, take a bath, or even be hugged. Bright light, loud noise and temperature changes may also become intolerable.
Very often, a child’s teacher may be the first to remark upon a sudden, marked deterioration in school performance. This can be down to cognitive changes, memory deficits, dysgraphia (difficulty with writing), concentration and focus difficulties, hyperactivity, impulsivity and new deficits of visuospatial skills. A previously able student may abruptly appear naughty, lazy or disruptive. This is further exacerbated by the onset of emotional lability, irritability, aggression, and/or severely oppositional behaviours. Children with PANS often display such troubled behaviours that school staff may conclude that there are problems at home, so stark is the change in the child.
Behavioural regression may be observed as a sudden reversion to ‘baby-talk’ (even in adolescents), or as a loss of age-appropriate social and self-care skills. Impaired independence in dressing and toileting are common.
Insomnia and sleep disturbance in children with PANS are also very common. Parents may note that previously sound sleepers begin struggling to go to sleep, waking during the night or having difficulty rising.
Urinary problems may also occur with many children regressing in their toileting habits, or complaining of not feeling dry after wiping.
Children can begin to restrict their food intake; due to obsessional fears, difficulty with swallowing, or fears of contamination or poisoning.
How is PANS diagnosed?
PANS is a clinical diagnosis and there is no specific diagnostic test which will prove or disprove the condition. PANS is not a rare condition, however it is incompletely understood and certainly underdiagnosed.
For a patient to be diagnosed with PANS, they must have experienced an abrupt, acute onset (usually within 24 - 48 hours) of OCD or severely restricted food intake along with two or more of the following symptoms (when not better explained by another known neurologic or medical disorder):
Anxiety
Motor or sensory abnormalities including tics
Sudden deterioration in school performance
Emotional lability
Irritability, aggression, and/or severely oppositional behaviours
Behavioural (developmental) regression).
Insomnia and/or sleep disturbances
Enuresis and/or urinary frequency
Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of psychosis and/or hallucinations. Additional symptoms often reported include: new phobias, trichotillomania (hair pulling) and enlarged/dilated pupils.
What treatments are used for PANS?
If you suspect your child has developed PANS triggered by COVID-19 infection, it is useful to take detailed notes of daily behaviour since the onset of symptoms to show to your GP, along with the GP Information Leaflet collated by the PANS PANDAS UK Charity.
PANS can be treated successfully, but early intervention facilitates the best outcomes.
Your GP may refer your child to Paediatrics and/or CAMHS for further assessment and diagnostic tests to exclude other diagnoses.
Diagnostic tests may include:
Throat, nasopharyngeal or peri-anal swab to rule out strep on a 48 hour culture.
ASOT, Anti-DNase B and Mycoplasma titres
Vit D3, U+E, LFT, FBC, CRP, TFT, ANA
Immunoglobulin and Immunoglobulin subsets
MRI
EEG
Tests to rule out other infections based upon medical and family history
At present, accessing diagnosis and treatment for Long Covid PANS in the UK is challenging. The lack of NICE guidelines in the UK leads to a lack of clarity and guidance for healthcare professionals. UK clinicians are not currently supported to follow the American or Nordic clinical guidelines. These guidelines recommend a three-pronged approach, consisting of treating ongoing verified infections or suspected inflammation, treating immune system dysregulation, and treating the mental health symptoms using:
Antibiotics
Anti-inflammatories
Short course of steroid therapy
Intravenous immunoglobulin (IVIG)
CBT or counselling
Research into COVID-19 and PANS is urgently needed. Moreover, the development of robust NICE guidelines to support early diagnosis, and clear evidence-based treatment recommendations, would change the futures of all those living with PANS.
Where can I find out more about PANS?
Senior Lead Rep & Lead Rep for Scotland
Katy Hindson
PANS PANDAS UK
22nd March 2022
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
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