POSITION STATEMENTS

PANDAS and the recent increase in scarlet fever and invasive Group A Strep

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PANS PANDAS UK is the UK charity supporting children with Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Due to current high numbers of cases of Group A Strep-related illnesses, we have written this short information leaflet to help you understand what this means for children with PANDAS.

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What is PANDAS?

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PANDAS is a health condition that appears very suddenly and affects the physical and mental health of children and young adults. It develops after a Strep A infection and is thought to occur due to the infection causing a misdirected immune response and/or brain inflammation. 

Symptoms often begin incredibly abruptly but may develop rapidly over the course of a few weeks. Children with PANDAS have symptoms such as extreme obsessive-compulsive behaviours, motor and vocal tics, severe separation anxiety and behavioural regression (such as ‘baby-talk'). Many children have symptoms so severe that they become unable to leave the house.

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Rage, restricted food intake, sleep disturbances and urinary problems are also common symptoms. Children with these conditions may also suffer with sensory sensitivities, hallucinations, and thoughts of self-harm and suicide.

 

What is Group A Strep?

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Group A Strep is a type of bacteria which can cause a number of different infections. These include tonsilitis, pharyngitis, scarlet fever, impetigo and pneumonia.

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Group A Strep is spread by close contact with an infected person and can be passed on through coughs and sneezes. Illnesses caused by it are treated with antibiotics.

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Group A Strep usually causes mild illness, such as throat and skin infections. On very rare occasions, it can cause more severe illnesses (such as Invasive Group A streptococcus, or IGAS). It can also go on to cause further complications such as rheumatic fever, Sydenham’s chorea and PANDAS.

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What to look out for?

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Parents and caregivers of children with PANDAS may, understandably, be very worried about what the increase in cases of Group A Strep infections might mean for their child. If you are concerned about whether your child with PANDAS may be particularly vulnerable to a worsening of PANDAS symptoms if they come into contact with Group A Strep, please consult your GP or consultant for advice.

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Knowing the symptoms of scarlet fever and other common Group A Strep infections will also be helpful in informing parents when to take their child to a GP for diagnosis and testing.

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Scarlet fever symptoms

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The first symptoms of scarlet fever often include a sore throat, headache, fever, and feeling or being sick.

After 12 to 48 hours a fine, red rash appears that feels like sandpaper. You may also notice a white coating on the tongue which peels, leaving the tongue looking red and swollen. Swollen gland (lumps) in the neck and peeling skin on the fingers and toes are also common.

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For more information on other common Group A Strep-related illnesses, please visit www.nhs.uk or see these resources on tonsilitis, impetigo and pneumonia.

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What can parents and caregivers of children with PANDAS do?

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As mentioned earlier, being aware of symptoms and consulting a medical professional for advice if you are concerned are sensible steps. Making sure that good hygiene and handwashing is in place will also help to stop any infection spreading.

You may wish to speak to your child’s school or college to discuss your concerns about the additional potential risk to your child from a Group A Strep infection given their PANDAS (or suspected PANDAS) diagnosis. Schools have a duty to notify their local Health Protection Team of a suspected scarlet fever outbreak at school. You could ask if they would be able to share this information with you.

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It is worth keeping in mind that this is an evolving situation, and parents/caregivers should check for any government updates.

 

What can schools do to support families with PANDAS at this time?

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Schools, nurseries, and other childcare settings will, of course, follow government guidance on infection control. They will encourage children with suspected cases of scarlet fever to see their GP and remind parents that infected children should not return to school until at least 24 hours after starting treatment with antibiotics. They will encourage good hygiene practices.

 

Schools should also try to keep good channels of communication with families of children with PANDAS during this worrying time. Families may wish to share the full PANS PANDAS UK “Statement on the increase in scarlet fever and invasive group A streptococcus above seasonally expected levels”.

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About PANS PANDAS UK

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PANS PANDAS UK is the only UK charity supporting children and families living with these conditions. We provide information, advocacy and community support to patients and carers. We raise awareness of the symptoms and treatment options for healthcare professionals so that they are better equipped to recognise when a child may have PANS or PANDAS. We are working to provide training in educational settings so that families and children living with these conditions receive the support they so desperately need. 

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