Encephalitis in children - A guide

Encephalitis in Children - A Guide is a comprehensive information resource aiming to improve the quality of life of children affected by encephalitis and their families. It follows the child and their family’s journey from the hospital ward, to the rehabilitation setting, school and home, hoping to direct them through the maze of health care, education and social services.

A recent survey to parents highlighted the importance of having the right information at the right time. Children and families need to understand what has happened to them, what they can do to maximise their recovery and what to expect from the future. This guide not only provides medical facts about encephalitis and acquired brain injury (ABI) that can follow, but can also give practical tips for all family members to enable them to appropriately look after themselves and the child affected.

This guide is accredited by the Information Standard, an accreditation scheme managed by the NHS England.

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Encephalitis in Children. A Guide was Highly Commended and shortlisted in the Long-Term Conditions award in the BMA Patient Information Awards 2018

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A three-day World Encephalitis Day event in Jacksonville, Florida, in February 2024. Brought to you by The World Encephalitis Day Alliance
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Siblings of children with encephalitis

Encephalitis may affect the whole family including siblings. They may have very mixed feelings, alternating between love, protectiveness and jealousy, and resentment and irritation.
Charlie's Story

Charlie became poorly with ADEM in February 2019. His mum, Louise, tells his story.
Alex's story

Alex had just started studying music at a university in Nashville when he became poorly with Epstein-Barr viral encephalitis. This is his story.
Cerys' story

Kerry talks about her daughter Cerys who was diagnosed with Anti-NMDAR encephalitis just before her 13th birthday
Aliya's story

Aliya was a 20-year-old college junior in Massachusetts, USA, when she was diagnosed with autoimmune encephalitis in December, 2019.
Natasha's story

Natasha was a happy and health toddler when she fell ill with encephalitis in 1996. She talks about her recovery, the guilt she sometimes feels, and coming to terms with the impact that encephalitis has had on her.
Hayleigh's Story

Hayleigh, from London, became poorly with Anti-NMDAR encephalitis in 2012. The then university student filmed a documentary about her experiences.
Juliana's story

Juliana, from Florida, USA, was 14-years-old when she became ill with Anti-NMDAR encephalitis. This is her story.
Paul's Story

Paul, who was affected by encephalitis as a teenager, shares his story with us, and the impact encephalitis has had on his life.
Gavin's story

Gavin, from Kentucky, was four-years-old when he became poorly with meningoencephalitis. His mum, Andrea, writes about his illness, the difficulties he faced, and his new career as a model

NMDAR antibody encephalitis

NMDAR antibody encephalitis is an autoimmune disease that causes psychiatric features, confusion, memory loss and seizures followed by a movement disorder, loss of consciousness and changes in blood pressure, heart rate and temperature.
Herpes Simplex virus encephalitis

Herpes simplex encephalitis is a type of infectious encephalitis which happens when herpes simplex virus (HSV) enters the brain. Usually, it begins with ‘flu-like’ symptoms followed by neurological deterioration, which may include personality and behavioural changes, seizures, weakness and difficulties in communication.
What is encephalitis?

Encephalitis is an inflammation of the brain caused by an infection or through the immune system attacking the brain in error.
Guidelines for recovery

No two people with encephalitis have the same outcomes. People recover at different paces. Recovery can be helped by having lots of rest, good nutrition, helpful social network and support from professionals.
Limbic encephalitis

The term ‘limbic encephalitis’ (LE) describes the condition when limbic areas of the brain are inflamed (swollen) and consequently not functioning properly. Most forms of LE fall into two main categories: infectious encephalitis and autoimmune encephalitis.
Death from encephalitis

Encephalitis is a serious neurological condition and unfortunately, despite improvements in specific and more supportive treatments such as excellent intensive care management, encephalitis still has a high mortality (death) rate.
Encephalitis: after-effects, recovery and rehabilitation

This booklet provides key information about the type of issues that people may have after encephalitis, why rehabilitation/support from professionals and families are important and what options for self-help are available.
West Nile encephalitis

West Nile encephalitis is a type of infectious encephalitis caused by West Nile virus. People usually become infected after being bitten by a mosquito, which has fed on an infected bird.
Emotional and behavioural changes

Following encephalitis, some people may experience emotional and behavioural changes including low mood, increased anxiety, depression, mood swings, frustration, aggression, impulsivity, disinhibition, and/or poor emotional regulation.
Get support

Our Support Service is here to help you with any questions about encephalitis, recovery and rehabilitation or emotional support.