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Encephalitis means simply 'inflammation of the brain'. It is usually caused by a viral infection. Exposure to viruses can occur through insect bites, food or drink contamination, inhalation of respiratory droplets from an infected person, or skin contact. Common illnesses such as measles and mumps can lead to encephalitis. Although viruses infecting the brain are a major cause of infectious encephalitis, the body’s reaction to an infection can also lead to encephalitis. This condition is called post infectious or autoimmune encephalitis.

Initial symptoms of encephalitis

• Fever or flu-like illness
• Headache
• Vomiting
• Sensitivity to light
• Stiff neck and back (occasionally)
• Confusion, disorientation
• Behaviour that is out of character
• Drowsiness
• Clumsiness, unsteady gait

More serious neurological signs

• Poor responsiveness, loss of consciousness, coma
• Seizures (fits)
• Muscle weakness or paralysis

A diagnosis of Encephalitis is made following a range of tests which can include:

• Lumbar puncture, in which the cerebrospinal fluid is tested for viral particles, especially herpes simplex virus. These tests can also exclude bacterial meningitis.
• Brain scans (CT or MRI) - to show the extent of any inflammation and to exclude brain tumours, aneurysms and strokes.
• An electroencephalogram (EEG) will help confirm a diagnosis of encephalitis by recording any unusual patterns of electrical activity in the brain.
• Blood tests to exclude metabolic encephalopathy.

It should be noted that it is not unusual for the results of some tests to be “normal”. It is important to initially exclude some more common and treatable diseases.

An antiviral medication, Acyclovir, will be prescribed. Acyclovir has significantly improved the outlook in cases of encephalitis caused by the herpes simplex virus, but it is not effective against other viruses. Acyclovir is given usually three times a day by direct infusion into the veins and a long line can be inserted if the drug is to be given for a long period of time.

Drugs which stop or prevent seizures (anti-convulsants) may also be given. In severe cases, the child may need to be placed in an Intensive Care Unit so that the doctors can monitor and treat any swelling in the brain. Steroids may be used to reduce inflammation. Antibiotics may also be prescribed: they are not effective against viruses but will help to prevent a bacterial infection in someone who is seriously ill.

Discharge from Hospital

Planning for discharge should start from the moment your child is admitted to hospital, and ideally, be managed by a named or key nurse. When it is time for your child to be discharged, you can request a Discharge Planning Meeting to make sure that proper plans, support and care can be provided to meet your child’s needs at home.

If your child is likely to have continuing health and social care needs, a care plan will be produced. This will identify who will provide the care and support for your child at home. As parents, you are likely to be seen as the primary carers of your child. You should be happy with the plans that are put in place, and if you are not, you need to say so and explain why. You should be convinced that all placements and plans are in place before your child returns home and begins to access the community services.

Your child’s GP should be advised of the discharge from hospital by letter, which may be sent directly or given to you to hand over. It usually gives information about hospital treatment, medication to be given at home and any follow-up arrangements. A typed discharge summary will usually be provided to the GP and should be received within 10 days of discharge.

A Department of Health document “Jacks Journey” is an “exemplar” of a pathway through the NHS for a child who has sustained an acquired brain injury. Jacks Journey follows a young boy who has a head injury but the discharge from hospital is also relevant to infections of the brain – see page 10 of “Jack’s Journey” (copies can be downloaded from the Department of Health website www.dh.gov.uk or requested from the Encephalitis Society.

Requesting a second opinion

The GP or the hospital doctor can refer you to a different consultant for another opinion of your child’s diagnosis or difficulty but they don’t have to do this if they don’t agree that it is necessary. You can choose to approach a consultant on a private basis, however this can be expensive.

If you have a complaint

'When things go Wrong'

The Patients Association produces a leaflet called “Making a Complaint”. There is a lot of information in this booklet, you will not need to read it all. It has been designed so that you can select the sections that are relevant to your particular situation. Copies can be obtained from the Patients Association, PO Box 935 Harrow, Middlesex HA1 3YJ Tel: 020 8423 9111 Helpline: 0845 6084455

www.patients-association.com

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Recovery

There is no set timetable for recovery. Being ill is upsetting for any child, sometimes children think they are ill because they have been bad and may need extra assurance. Spending time in hospital is stressful no matter what the illness. A child who has been in hospital with encephalitis will almost certainly feel traumatised. The experience is most likely to have left the family too feeling helpless and confused.

Families may feel that returning to the home situation will make everything “normal” again. However both the child and the family may find there is a great deal of adjusting required to a new situation. Children may behave differently, demand attention and have unexpected outbursts. The younger the child, the harder it is for them to explain how they feel. Some children will quickly make a good recovery despite being very ill and it is the parents who may take longer to adjust after such a traumatic experience. Brothers and sisters, particularly young children, will need extra attention and understanding because they can experience anxiety and feelings of isolation.

Encephalitis may cause an “acquired brain injury” and this may affect the brain’s ability to function normally. The brain takes much longer to recover from an injury than other parts of the body such as muscles, bones or skin. This is because new nerve cells do not generate easily and renewed neural networks may not function in the same way. Unlike other parts of the body you cannot see your child’s brain repairing and may assume all is back to normal when in fact some areas are still in recovery. An assessment by a paediatric clinical or neuropsychologist can help identify any problems. The assessment will be useful when looking at educational provision and other services which you may need.

A lengthy period of rest and quiet will aid your child’s recovery, avoiding information overload which could set back the process. Good nutrition is important for brain repair. Nutrients that are especially important are antioxidants (found in fresh fruit and vegetables) and omega 3’s (found in fatty fish). The Encephalitis Society ‘s Fact sheet “Caring for your brain” gives additional information.

Plan a gradual return to school / nursery; don’t worry about your child getting behind at school, they will catch up far quicker when they are further recovered. Try to schedule rest periods into your child’s day; tiredness is the brain’s way of shutting down to continue with repair. Becoming overtired may slow down the repair process and can be the reason for difficult behaviour. If your child’s normal sleep pattern is disrupted you may need to seek medical help.

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Flow Chart through the illness

Last modified March 2006