What is encephalitis

Encephalitis is an inflammation of the brain. Encephalitis is caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

Anyone at any age can get encephalitis. There are up to 6,000 cases in the UK each year and potentially hundreds of thousands worldwide. In the USA there were approximately 250,000 patients admitted to hospital with a diagnosis of encephalitis in the last decade.

Although some people recover from encephalitis with no consequences, in some people nerve cells in the brain may be damaged or destroyed by the inflammation. The resulting damage is termed an acquired brain injury (ABI). The degree and the type of damage vary according to the cause of encephalitis, the severity of the inflammation, the area of the brain affected and any delay in administering the appropriate treatment.

• Most of the after-effects of encephalitis are hidden (invisible).
• Encephalitis can affect people’s emotions and the way people perceive themselves and others.
• People recover at different paces, however, there can be a continuum of improvement.

People affected by encephalitis may look like they did before the illness with more problems being cognitive, emotional, behavioral and social rather than physical. Some of the problems can be subtle at the time of discharge from hospital, but become evident later, when people are attempting to get back to normal life and work. The danger is that these problems may be misattributed to factors such as ‘stress’ rather than being associated with their acquired brain injury (ABI).

The emotional impact of encephalitis is different for each individual depending on the brain systems affected by encephalitis, their personality, their emotional state prior to their brain injury, their social support network (family and friends) and their stage of recovery. An emotional reaction to the brain injury may sometimes be the first step on the road to recovery. This is because it suggests that people are more likely to have an understanding of their strengths and weaknesses and may therefore be more likely to benefit from rehabilitation.

Initial recovery may be rapid but it can fall short of complete. Further recovery takes place more slowly over a period of months and even years. Healthy diet, gentle exercise, rest, pacing your activities, determination, a positive attitude and emotional and practical support can help your recovery.

Encephalitis is a family affair. Coming to terms with the after-effects of encephalitis can be very distressing and challenging for everyone concerned. The person you knew, or who was you, may have changed and the person they have become, or you have become, may present with a number of problems. The impact of encephalitis will be different for each individual depending on the brain systems affected by encephalitis, their personality, their emotional state and health prior to their illness, and their social support network (family and friends).

Encephalitis causes

The exact cause of encephalitis is often unknown. But when a cause is known, the most common is a viral infection. Bacterial infections and noninfectious inflammatory conditions also can cause encephalitis.

Encephalitis is caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis). Viruses are the most frequently identified cause of infectious encephalitis (e.g. herpes viruses, enteroviruses, West Nile, Japanese encephalitis, La Crosse, St. Louis, Western equine, Eastern equine viruses and tick-borne viruses). Any virus has the potential to produce encephalitis, but not everybody who is infected with these viruses will develop encephalitis. Very rarely, bacteria, fungus or parasites can also cause encephalitis.

Some types of autoimmune encephalitis such as acute disseminated encephalomyelitis (ADEM) are caused by infection in which case the term ‘post-infectious encephalitis’ is used. Other forms of autoimmune encephalitis are associated with finding specific antibodies in blood such as voltage-gated potassium channels (VGKC) complex (anti-LGI1 and Caspr2), N-methyl-D-aspartate (NMDA) receptor, GAD, AMPAR and GABA antibodies. Antibodies, also called immunoglobulins, are large Y-shaped proteins which identify and help remove foreign antigens such as viruses and bacteria. The reason why these antibodies are produced by the immune system in people with autoimmune encephalitis is not known in most cases. Sometimes a tumor (benign or cancerous) may generate the antibody.

Other types/causes of encephalitis: Encephalitis lethargica, Human immunodeficiency virus (HIV) meningoencephalitis and Subacute sclerosing pan-encephalitis (SSPE).

Infectious encephalitis

Viruses are the most common cause of infectious encephalitis.

• Human herpes viruses: herpes simplex type I, herpes simplex type II, varicella-zoster virus, Epstein-Barr virus, cytomegalovirus
• Throat and chest viruses: flu, enteroviruses
• Gut viruses: enteroviruses, echo virus. These viruses include the poliovirus and the coxsackievirus, which usually cause an illness with flu-like symptoms, eye inflammation and abdominal pain.
• Mosquito-borne viruses. These viruses can cause infections such as West Nile virus, Japanese encephalitis virus, La Crosse, St. Louis, western equine and eastern equine encephalitis. Symptoms of an infection might appear within a few days to a couple of weeks after exposure to a mosquito-borne virus.
• Tick-borne viruses. The Powassan virus is carried by ticks and causes encephalitis in the Midwestern United States. Symptoms usually appear about a week after a bite from an infected tick.
• Rabies virus. Infection with the rabies virus, which is usually transmitted by a bite from an infected animal, causes a rapid progression to encephalitis once symptoms begin. Rabies is a rare cause of encephalitis in the United States.
• Childhood infections. Common childhood infections — such as measles (rubeola), mumps and German measles (rubella) — used to be fairly common causes of secondary encephalitis. These causes are now rare in the United States due to the availability of vaccinations for these diseases.

Bacteria, fungus and parasites can cause infectious encephalitis more rarely.

• bacteria: mycoplasma, meningococcal, pneumococcal, listeria
• fungi: histoplasma, cryptococcus, candida
• parasites: malaria, toxoplasma

Herpes simplex encephalitis

Herpes simplex encephalitis is a type of viral encephalitis which happens when herpes simplex virus (HSV) enters the brain.

Usually, people get infection of the mouth and throat with herpes simplex virus type 1 (HSV 1) early in life often without symptoms. The virus attaches to, and enters sensory nerves in the throat and moves to nerve cells called ‘ganglia’ (e.g. the trigeminal ganglia). Here the virus establishes a latent (hidden) and life-long infection. In some people, from time to time, the virus may reactivate to produce recognisable lesions such as cold sores around the lips and nose.

While HSV 1 is widespread, Herpes simplex encephalitis is rare. How HSV gains access to the brain is not known. There are various hypotheses such as via the blood stream or via nerves but there is no definite evidence to support any of the suggested routes to date.

Whichever way HSV 1 gains access to the brain, in the acute illness, the damage that results from the viral infection and associated inflammation is often severe. Typically, the virus is initially present in a part of the brain called the limbic cortex. It may then spread to the adjacent frontal and temporal lobes of the brain. It is the destruction in these areas together with brain swelling from the inflammation, which causes many of the symptoms.

Herpes simplex encephalitis symptoms

Herpes simplex encephalitis usually develops over a period of days but, like any other viral infection, depending, for example, upon the immunity of the patient, the disease may take a variable course. Typically, it begins with ‘flu-like’ symptoms followed by neurological deterioration, which may include personality and behavioral changes, seizures, weakness and difficulties in communication. If untreated, it may lead to progressive impairment of consciousness, coma and death.

Herpes simplex encephalitis diagnosis

The rapid onset and development of herpes simplex encephalitis presents a dilemma to the doctor. During the early stages, when treatment would be most effective, the symptoms can be very general, so there may be several possible diagnoses.

Brain imaging by computerised tomography (CT) scan, or, for a clearer picture, a magnetic resonance imaging (MRI) is helpful. Sometimes an electro-encephalogram (EEG) to monitor the brain’s electrical activity assists diagnosis. These procedures, together with careful and continuous clinical assessment, provide data which may be suggestive of herpes simplex encephalitis but, also importantly, may exclude other conditions.

The key diagnostic procedure is a lumbar puncture (LP) to take some of the fluid bathing the brain and spinal cord  – cerebrospinal fluid (CSF) for laboratory analysis. One of the tests called the polymerase chain reaction (PCR) is very sensitive at detecting low levels of viruses’ genetic fingerprints. In general, the test is useful for up to 10 to 20 days after the onset of neurological disease and then usually becomes negative. At this time, a further procedure for the detection of herpes virus antibody in the cerebrospinal fluid (CSF) can be used. This also provides an accurate diagnosis. This latter test is often used as a follow up to the initial polymerase chain reaction (PCR) test(s). When a patient is admitted to hospital, because of the ‘vague’ nature of the symptoms (in some cases) a lumbar puncture may not be performed immediately. This is unfortunate because the lumbar puncture is an accurate test, which provides a diagnosis at the time when treatment is most helpful to the patient. However, a polymerase chain reaction (PCR) test should always be carried out as soon as possible in all suspected cases of herpes simplex encephalitis.

Herpes simplex encephalitis treatment

If therapy with a drug called Aciclovir (which reduces replication of the virus) can be started during the first few days of the illness (48 hours), there is a dramatic reduction in the mortality rate from around 70-80% down to 10-20%. The provision of high levels of nursing care and the management of complications such as brain edema (i.e. swelling) are also key factors, which influence the outcome of herpes simplex encephalitis.

A minimum 14-day course of treatment with Aciclovir into the veins in adults is required. Towards the end of this period, the lumbar puncture should be repeated and PCR analysis of the CSF performed. If the PCR no longer detects herpes simplex virus (HSV) the treatment can be stopped; if herpes simplex virus (HSV) is identified, the treatment should continue with repeat lumbar punctures at 7-day intervals until the absence of herpes simplex virus (HSV) is confirmed.

Herpes simplex encephalitis prognosis

The reduction in herpes simplex encephalitis mortality has led to a paradoxical situation. There are without doubt more survivors, but many may suffer from permanent neurological and/or psychological deficits, for example amnesia (memory loss). Improvements are still needed to both speed diagnosis and improve treatment.

Recent research has identified that herpes simplex encephalitis may sometimes be followed by a rare complication: development of a second encephalitis. This encephalitis is autoimmune and characterized by the presence of antibodies in the patient’s blood against a brain protein—the N-methyl-D-aspartate (NMDA) receptor. The anti-N-methyl-D-aspartate (NMDA) receptor encephalitis is treated differently to herpes simplex encephalitis.

The message is that our understanding of conditions such as viral encephalitis is continually developing. However, these are complex conditions and whilst it is unlikely that encephalitis will be preventable (in the near future) the prospect for the rapid and efficient diagnosis for many of these conditions will improve during coming years. The consequence of improved and rapid diagnosis is that early treatment—which is so important—can and will increasingly be introduced.

Subacute sclerosing pan-encephalitis

Subacute sclerosing pan-encephalitis is a very rare type of encephalitis which can follow natural (wild) measles virus infection.

• ‘Subacute’ means a slow start and, usually, a gradual progression.
• ‘Sclerosing’ means a reaction which damages and scars the brain.
• ‘Pan-encephalitis’ means that all areas of the brain are affected.
• ‘Chronic Encephalitis’ means a type of encephalitis that has a slow time course.

Unfortunately, subacute sclerosing pan-encephalitis is a progressive form of encephalitis without a cure. Despite multiple attempts, no satisfactory treatment has been developed. In a few cases there has been a slowing down of the disease process or a remission following use of certain drug combinations, however, most of those affected die within about five years of diagnosis.

Subacute sclerosing pan-encephalitis is a rare condition. It occurs in about 2 per 100,000 cases of natural measles. It is more common in developing countries because there is a higher rate of natural measles infection and less vaccination coverage. It is rare in Western countries where there is an effective measles immunisation programme. The measles vaccination will protect against SSPE as long as the child has not been exposed to the measles virus before getting the vaccine.

Subacute sclerosing pan-encephalitis occurs more often in children or young adults who were younger than two years old when they had the initial measles infection. Boys are affected more often than girls.

Subacute sclerosing pan-encephalitis symptoms

The initial symptoms of subacute sclerosing pan-encephalitis can be very subtle and there are several stages of this illness. After the initial measles infection, the virus lies hidden in brain cells.

The symptoms of subacute sclerosing pan-encephalitis usually start around 6-8 years after the measles infection and are related to destruction of the infected brain cells. At first, the problems noted are subtle and may be hard to spot as an illness. Usually, it begins with a change in personality and the ability to function at work, or for a child to cope with school, is altered. It may be a noticeable untidiness in hand writing, a difficulty in doing ordinary daily tasks, or a change in speech during conversation. This can initially lead doctors or other specialists to think that the child or young adult is suffering from psychological or psychiatric problems. Seizures (fits or convulsions) or involuntary movements, such as jerks of the limbs (often known as myoclonus) start and it is often at this point that further investigations are initiated. The start of these abnormal movements forms the next phase of the illness.

Within a few months other movement problems start such as unwanted and uncontrolled movement of limbs which come and go, a gradual emergence of stiffness, and increased (spastic) muscle tone which can be more noticeable down one side of the body. As these signs emerge, there is progression of the brain deterioration and it appears that the child or adult is suffering from a type of dementia. Seizures can be very troublesome and don’t respond well to treatment. Vision, or recognizing what is seen, becomes affected by this stage.

The dementia and disability become severe and the person affected becomes totally dependent on the family or carers for all their needs. Finally, problems affecting feeding, swallowing and breathing contribute to the final stage of the illness. The patient may stay in this period for many months or even years. Death is usually caused by pneumonia. Very rarely subacute sclerosing pan-encephalitis comes on more quickly and progresses more rapidly, particularly if measles is caught by the infant around the time of birth. subacute sclerosing pan-encephalitis can also be rapid if it appears in a mother during her pregnancy.

Subacute sclerosing pan-encephalitis treatment

Antiviral agents and a medication called Interferon Alpha may alter the effects of the illness when given as a long-term treatment. Immunoglobulins (a blood product that is given through the veins) and plasmapheresis (cleaning the blood of inflammatory chemicals) have also been reported to have some benefit. Other medications have not been demonstrated to have any effect and unfortunately, large scale trials cannot be undertaken due to the rarity of the disease. Despite initial improvements or a slowing in progression, the disease eventually resumes its course and no cure has been reported up to this time. Sometimes patients can die as a result of complications related to the treatments themselves.

Symptom control is very important and can improve the patient’s quality of life. Anticonvulsant (medication to stop fits) drugs can be helpful for controlling seizures. Other medications can be used to relax stiff muscles. Patients will ultimately require feeding via a nasogastric tube (tube passed from the nose into the stomach) or a gastrostomy (tube directly into the stomach from the tummy wall inserted by a small operation).

The main part of management is a co-ordinated approach to care, by the health professionals, once the condition is recognized. With a multidisciplinary approach much can be done to relieve discomfort, support nutrition and daily care. The child, or young person, and their family will need emotional and practical support. It is recommended that early referral to a psychologist, social worker, palliative care team and hospice is offered.

Autoimmune encephalitis

Some types of autoimmune encephalitis which is where the immune system is attacking the brain, such as acute disseminated encephalomyelitis (ADEM), are caused by infection in which case the term ‘post-infectious encephalitis’ is used.

Other forms of autoimmune encephalitis are associated with finding specific antibodies in blood such as VGKC complex (anti-LGI1 and Caspr2), NMDA receptor, GAD, AMPAR and GABA antibodies.

Antibodies, also called immunoglobulins, are large Y-shaped proteins which identify and help remove foreign antigens such as viruses and bacteria. The reason why these antibodies are produced by the immune system in people with autoimmune encephalitis is not known in most cases. Sometimes a tumor (benign or cancerous) may generate the antibody.

• Acute disseminated encephalomyelitis (ADEM): Acute disseminated encephalomyelitis accounts for around 10% of all known cases of encephalitis. Acute disseminated encephalomyelitis usually affects children and begins after a childhood rash (exanthema), other viral infections or immunizations. There is usually a latent period of days to two to three weeks before symptoms emerge. The illness has been poorly understood and a variety of terminologies used to describe it, these including post-viral, post-infectious or para-infectious.The white matter of the brain (which contains nerve fibers and myelin) is predominantly affected in acute disseminated encephalomyelitis. Under the microscope it can be seen that there is invasion with immune cells from the blood. Where these cells accumulate, myelin (the protective fatty substance around nerves) is destroyed.
• Acute disseminated encephalomyelitis (ADEM) in children: Often the child will have a history of an infection of some sort about 2-4 weeks before they become ill with acute disseminated encephalomyelitis. Such infections may be ordinary and easily forgotten such as a cold, sore throat or tummy upset. The immune system overreacts to this infection trigger and causes inflammation of the nerve coverings affecting how they work. Acute disseminated encephalomyelitis usually starts suddenly. The symptoms can be severe and worrying. Headache, vomiting, drowsiness and neck stiffness are all common. Loss of balance and inability to walk or stand may also quickly appear. Seizures (convulsions or fits) can occur in up to one third of children, but they are not usually difficult to control.
• Anti-NMDAR encephalitis: The major role of our immune system is to recognise and get rid of infection. But sometimes some components of the immune system, called antibodies, may instead react with proteins in our own body causing an autoimmune disease. When this reaction is against proteins in the brain it is called autoimmune encephalitis. If the brain protein is the N-methyl-D-aspartate (NMDA) receptor, the condition is termed NMDA-receptor antibody encephalitis, or anti-NMDAR encephalitis. Essentially the immune system is attacking the brain.The N-methyl-D-aspartate (NMDA) receptor is a protein in the brain that helps control thoughts, mood and movements, and therefore antibodies against NMDA receptors are likely to have an important role in altering these functions. This encephalitis affects the brain more diffusely than purely the limbic system, and therefore it is not classified as a limbic encephalitis. At onset, the most distinctive features include prominent psychiatric symptoms, seizures, confusion and memory loss. Patients will sometimes show bizarre and often rather disturbing behaviors. They may see things which aren’t there, develop strange beliefs or appear agitated. Typically 10 to 20 days later, patients develop a movement disorder, variations in blood pressure, heart rate and temperature and may become less conscious. The movement disorder often consists of continuous writhing and twitching of face and limbs but can also be a generalized slowing-down of movement. Most patients develop several of these features, but very rarely individual patients may experience only a few of these features.
• Hashimoto’s encephalopathy: Hashimoto’s encephalopathy is a rare condition, which is probably of autoimmune origin. Autoimmunity describes disorders in which the immune system mistakenly attacks the body’s own cells. Hashimoto’s encephalopathy can affect all age groups but typically affects females of around 50 years of age. Recent insights into other forms of autoimmune encephalitis have taught scientists that Hashimoto’s encephalopathy may not represent a single diagnosis, but a syndrome which includes a number of specific conditions. Therefore, the symptoms and signs of Hashimoto’s encephalopathy are varied. Currently, the exact cause is unknown although, but it is probably an autoimmune condition (please see above). The thyroid antibodies are thought likely to be a marker of the illness rather than the cause of the problem, and are very common in the general population. Thyroid function is usually normal. The clinical presentation of Hashimoto’s encephalopathy (the symptoms) typically reaches its worst within a few weeks and often includes drowsiness, imbalance, episodes which look like strokes, psychiatric disturbances, jerky movements (some of which may be seizures) and sometimes coma.
• Rasmussen encephalitis: Rasmussen’s encephalitis, also called Rasmussen’ syndrome, is a rare, progressive, chronic encephalitis (inflammation of the brain). It occurs mainly in children (most cases are seen in six to seven-years-old children). However, around 10% of all cases are adolescents and adults. Rasmussen encephalitis occurs usually in healthy individuals. It is estimated that no more than two new cases per year are identified in large epilepsy centers.
• Limbic encephalitis: The term limbic encephalitis describes the condition when limbic areas of the brain are inflamed (swollen) and consequently not functioning properly. The main regions of the limbic system include the hippocampus and amygdala. The limbic areas of the brain control many functions including memory, learning, and emotions such as aggression. In addition, some of these limbic areas are susceptible to seizures, which are a common feature of limbic encephalitis. The symptoms of limbic encephalitis include memory loss, seizures, confusion, disturbances of sleep and psychological problems such as altered personality or behavior. Most forms of limbic encephalitis fall into two main categories:
  • Infectious encephalitis – caused by direct invasion of the limbic area of the brain by a bug, usually a virus.
  • Autoimmune encephalitis – caused by the person’s own immune system reacting against parts of the limbic system.
• LGI1/CASPR2-antibody encephalitis: When your body’s immune system produces antibodies that target LGI1 (leucine-rich glioma inactivated 1) or CASPR2 (contactin-associated protein 2) in your brain, they cause an encephalitis often termed ‘limbic encephalitis’. Men are roughly affected twice as often as women. Initially, typically, family members notice seizures and/or that their relative becomes forgetful, confused, drowsy and withdrawn.Seizures occur in almost all cases but can look very subtle. These may take the form of brief jerks of the face and arm (termed faciobrachial seizures) – this diagnostic sign is highly suggestive of LGI1-antibodies. Alternatively, they can appear as brief ‘absences’ when patients glaze over for a few seconds (also called ‘temporal lobe epilepsy’), or full blown arm and leg jerking which can be very disturbing for observers (also known as generalized seizures).Patients can also develop mood disorders (like depression), bizarre thoughts and behaviors and sleep disturbances.

Risk factors for encephalitis

Anyone can develop encephalitis. Factors that may increase the risk include:

• Age. Some types of encephalitis are more common or more severe in certain age groups. In general, young children and older adults are at greater risk of most types of viral encephalitis.
• Weakened immune system. People who have HIV/AIDS, take immune-suppressing drugs or have another condition causing a weakened immune system are at increased risk of encephalitis.
• Geographical regions. Mosquito- or tick-borne viruses are common in particular geographical regions.
• Season of the year. Mosquito- and tick-borne diseases tend to be more common in summer in many areas of the United States.

Encephalitis prevention

The best way to prevent viral encephalitis is to take precautions to avoid exposure to viruses that can cause the disease. Try to:

• Practice good hygiene. Wash hands frequently and thoroughly with soap and water, particularly after using the toilet and before and after meals.
• Don’t share utensils. Don’t share tableware and beverages.
• Teach your children good habits. Make sure they practice good hygiene and avoid sharing utensils at home and school.
• Get vaccinations. Keep your own and your children’s vaccinations current. Before traveling, talk to your doctor about recommended vaccinations for different destinations.
  • MMR (measles, mumps and rubella) vaccine
  • Japanese encephalitis vaccine – recommended for travelers to at-risk areas, such as parts of Asia
  • Tick-borne encephalitis vaccine – recommended for travelers to certain parts of Europe (but not the UK) and Asia
  • Rabies vaccination – recommended for travelers to at-risk areas where access to medical care is likely to be limited

Protection against mosquitoes and ticks

Use Insect Repellent

Use Environmental Protection Agency (EPA)-registered insect repellents with one of the active ingredients below ¹. When used as directed, EPA-registered insect repellents are proven safe and effective, even for pregnant and breastfeeding women.

• DEET
• Picaridin (known as KBR 3023 and icaridin outside the US)
• IR3535
• Oil of lemon eucalyptus (OLE) or para-menthane-diol (PMD)
• 2-undecanone

Find the insect repellent that’s right for you by using EPA’s search tool (https://www.epa.gov/insect-repellents/find-repellent-right-you).

Tips for Everyone

• Always follow the product label instructions.
• Reapply insect repellent as directed.
  • Do not spray repellent on the skin under clothing.
  • If you are also using sunscreen, apply sunscreen first and insect repellent second.

Tips for Babies & Children

• Always follow instructions when applying insect repellent to children.
• Do NOT use insect repellent on babies younger than 2 months old. Instead, cover an infant carrier or stroller with mosquito netting.
• Do NOT apply insect repellent onto a child’s hands, eyes, mouth, and cut or irritated skin.
  • Adults: Spray insect repellent onto your hands and then apply to a child’s face.
• Do NOT use products containing oil of lemon eucalyptus (OLE) or para-menthane-diol (PMD) on children under 3 years old.

Natural insect repellents (repellents not registered with EPA)

• Scientists do not know the effectiveness of non-EPA registered insect repellents, including some natural repellents.
• To protect yourself against diseases spread by mosquitoes, CDC and EPA recommend using an EPA-registered insect repellent.
• Choosing an EPA-registered repellent ensures the EPA has evaluated the product for effectiveness.

Protect your baby or child

• Dress your child in clothing that covers arms and legs.
• Cover crib, stroller, and baby carrier with mosquito netting.

Wear long-sleeved shirts and long pants

• Treat items, such as boots, pants, socks, and tents, with permethrin* or buy permethrin-treated clothing and gear.
  • Permethrin-treated clothing will protect you after multiple washings. See product information to find out how long the protection will last.
  • If treating items yourself, follow the product instructions.
  • Do NOT use permethrin products directly on skin.

*In some places, such as Puerto Rico, where permethrin products have been used for years in mosquito control efforts, mosquitoes have become resistant to it. In areas with high levels of resistance, use of permethrin is not likely to be effective.

Take steps to control mosquitoes inside and outside your home

• Use screens on windows and doors. Repair holes in screens to keep mosquitoes outside.
• Use air conditioning when available.
  • Sleep under a mosquito bed net if air conditioned or screened rooms are not available or if sleeping outdoors.
• Once a week, empty and scrub, turn over, cover, or throw out items that hold water, such as tires, buckets, planters, toys, pools, birdbaths, flowerpots, or trash containers. Check inside and outside your home. Mosquitoes lay eggs near water.

To minimize your exposure to mosquitoes and ticks:

• Dress to protect yourself. Wear long-sleeved shirts and long pants if you’re outside between dusk and dawn when mosquitoes are most active, and when you’re in a wooded area with tall grasses and shrubs where ticks are more common.
• Apply mosquito repellent. Chemicals such as DEET can be applied to both the skin and clothes. To apply repellent to your face, spray it on your hands and then wipe it on your face. If you’re using both sunscreen and a repellent, apply sunscreen first.
• Use insecticide. The Environmental Protection Agency recommends the use of products containing permethrin, which repels and kills ticks and mosquitoes. These products can be sprayed on clothing, tents and other outdoor gear. Permethrin shouldn’t be applied to the skin.
• Avoid mosquitoes. Refrain from unnecessary activity in places where mosquitoes are most common. If possible, avoid being outdoors from dusk till dawn, when mosquitoes are most active. Repair broken windows and screens.
• Get rid of water sources outside your home. Eliminate standing water in your yard, where mosquitoes can lay their eggs. Common problems include flowerpots or other gardening containers, flat roofs, old tires and clogged gutters.
• Look for outdoor signs of viral disease. If you notice sick or dying birds or animals, report your observations to your local health department.

Protection for young children

Insect repellents aren’t recommended for use on infants younger than 2 months of age. Instead, cover an infant carrier or stroller with mosquito netting.

For older infants and children, repellents with 10 to 30 percent DEET are considered safe. Products containing both DEET and sunscreen aren’t recommended for children because reapplication — which might be necessary for the sunscreen component — will expose the child to too much DEET.

Tips for using mosquito repellent with children include:

• Always assist children with the use of mosquito repellent.
• Spray on clothing and exposed skin.
• Apply the repellent when outdoors to lessen the risk of inhaling the repellent.
• Spray repellent on your hands and then apply it to your child’s face. Take care around the eyes and ears.
• Don’t use repellent on the hands of young children who may put their hands in their mouths.
• Wash treated skin with soap and water when you come indoors.

After-effects of encephalitis

Nerve cells may be damaged or destroyed by both the infection and inflammation. The resulting damage is termed acquired brain injury (ABI). There will be a wide variation in how encephalitis affects the person. No two people will have the same outcome. Some people recover from encephalitis with a few or no difficulties. Other people are left with significant after-effects.

The loss of brain function from acquired brain injury can range from minor, to more significant, impairments. The degree and type of damage will vary according to the cause and severity of the inflammation, the parts of the brain affected and any delay in treatment. There may be cognitive, physical, emotional and/or behavioral problems.

Cognitive changes after encephalitis

Cognition refers to mental processes such as attention, memory, language, problem solving, decision making, planning and organization. These processes support our everyday activities from running a household, maintaining friendships, working, driving and studying. Following encephalitis, an individual will experience changes in these mental abilities to varying degrees and, in turn, may have difficulties in their everyday activities. The pattern of cognitive impairments following encephalitis will be different from person to person, depending on the brain systems affected and the type of encephalitis. A neuropsychological assessment is recommended to determine the pattern of cognitive changes following encephalitis, to then develop a rehabilitation plan to allow an individual to manage their cognitive problems and improve their everyday functioning.

Information processing

Information processing refers to the ability to think things through, pay attention and concentrate. Attention refers to the ability to focus on one task, to take in information, or to divide attention between tasks. Concentration generally refers to the ability to sustain attention across a period. Individuals affected by encephalitis may have difficulty processing information quickly, which may result in a slowness to answer questions or the need for increased time to complete tasks. It may be difficult to concentrate, with increased distractibility and poor mental stamina across the day. Following encephalitis, it may also be difficult to take in and process information leading to an overload of information and a sense of being overwhelmed by conversation or noise.

Memory

Confronted with someone who has memory problems following encephalitis, it is very important to remember that not every aspect of memory is affected. Memory can be affected in different ways. It may be difficult to:

• remember recent events, such as what happened last week, where a belonging was left within the house or conversations
• follow directions and finding locations
• learn a new skill, such as lessons at school or how to use a new mobile phone
• remember events and people from their life before the encephalitis
• remember what has to be done at a future time, such as appointments or paying a bill next week
• remember people’s names
• remembering what they have read and following the storyline of a movie

Language

Many people experience language difficulties following encephalitis such as understanding speech or with expressing themselves. Some people have difficulty finding the right word. It may be evident that the person has problems with speech, in that it lacks fluency or else is fluent but doesn’t seem to make sense. Other people may also find difficult to take in and understand conversations so that an individual experiences an overload of information. Others may find it difficult to stick to the topic or ‘monopolise’ conversation.

Difficulties with receptive (understanding) and expressive language following a brain injury is termed aphasia.

Executive function

The term ‘executive function’ refers to the high level cognitive skills required to identify and successfully complete goals. This includes abilities such as planning, problem solving, organization, flexibility in changing a strategy that is not being effective, and holding back inappropriate responses. Difficulty in one or all of these areas occurs to varying degrees following encephalitis with a significant impact on everyday life and relationships. People may struggle to get to an appointment on time, fail to complete tasks once started or have trouble juggling multiple tasks at work. They appear to be ‘less organized’ than they used to be.
Insight

Following encephalitis, an individual may have reduced awareness of their difficulties as a direct result of the brain systems affected. It may be hard for them to recognize changes in their thinking or behavior and how such changes may affect their return to everyday life, including driving and working. An individual may also understandably find it difficult to accept the impact of the encephalitis and deny that they have any problems. Both reduced insight and denial of problems pose challenges for family members.

Prosopagnosia

Prosopagnosia (or ‘face blindness’) is characterized by severe difficulties in face recognition. People with the condition cannot recognize the faces of their closest friends and family, and often their own face. The pure form of the condition means people do not have any other difficulties and they can access all their stored knowledge about a person once they know their name. They can also still recognize objects. However, the pure form of prosopagnosia is very rare. Most people who acquire face recognition difficulties experience other cognitive and visual difficulties alongside the condition. This occurs because brain injury tends to affect a number of brain regions, and face recognition difficulties therefore mostly present as one of several symptoms of brain damage rather than as an isolated condition.

Confabulation

Confabulation is difficult to describe. At its simplest, confabulation is a problem with a person’s memory. Some people think of it as having ‘false memories’. Someone who is confabulating believes in this memory as if it is real, they genuinely do not realize that what they are remembering did not happen.

This can be difficult to understand. A good way of thinking about it is that all of us from time to time make mistakes in what we remember. Usually we realize our mistake, we have a feeling that it is not quite right. However, when someone had a brain injury, the person stops realizing they are making a mistake. For example, the affected person might tell you in great detail how his or her parents visited last night, and later you discover that the mother died four years ago and the father died twenty years ago.

Emotional and behavioral changes

Following encephalitis, some people may experience emotional and behavioral changes including low mood, anxiety, depression, frustration, aggression, impulsivity, disinhibition, and/or poor emotional regulation. Family members and carers may report that their loved ones’ personality has ‘entirely changed’. For example, they may suggest that their loved one is more laid-back than they used to be or that they are now more ‘extroverted’ than was previously the case.

These changes may reflect the direct effect of encephalitis on brain systems that help us to perceive, understand, express our emotions and control our behavior. Emotional and behavioral changes may also reflect an individual’s reaction to the difficulties in everyday functioning as a result of other impairments subsequent to encephalitis. The emotional impact of encephalitis will be different for each individual depending on the brain systems affected by encephalitis, their personality, their emotional state prior to their illness and their social support network.

Emotional lability

Following encephalitis, some people may experience uncharacteristic extremes of emotion, which are difficult to control. For example, they may find that they become very tearful more easily without warning or in response to something sad, such as a movie. Others find that they laugh or smile inappropriately, such as when being told a sad story or bad news.

For others, rather than there being an increase in emotion the brain injury can cause what seems to be an absence or flattening of emotion. A person may intellectually ‘know’ that something is distressing, but they are detached from the experience and do not ‘feel’ distressed or upset.

Frustration, anger and aggression

Frustration and anger are common following encephalitis. Anger may reflect the direct effect of encephalitis on the brain systems that control emotional responses. For example, following encephalitis a person may have a shorter fuse or/and say/do things without thinking due to changes in frontal brain systems. It can be more difficult to control emotional reactions with an increase in anger outbursts. At the extreme, this may include acting with verbal or physical aggression. Frustration, irritability and anger may also be a response to the everyday difficulties that arise from cognitive or physical changes following encephalitis. For example, it can be irritating to misplace belongings or not be able to get the words out when you want to. Other people may express frustration at not being able to return to work or join in their usual social activities.

Perception of emotion

Encephalitis may affect the brain systems involved in the perception and understanding of emotion. This may make it difficult to ‘read’ and understand emotions in others as portrayed by their tone of voice or facial expression. Difficulty recognizing and understanding these non-verbal social cues may lead to misunderstandings and social difficulties, or people being seen as ‘lacking in empathy’ or being ‘self-centered’.

Anxiety

Anxiety and worry may occur after encephalitis. This may reflect the direct effects of encephalitis on the emotional regulatory centers of the brain, such that the sense of threat is amplified or there is difficulty taking on feedback to dampen down an increased sense of anxiety. Anxiety can also be a response to the changes to an individual’s world after encephalitis as a person tried to make sense of cognitive, emotional and behavioral changes and the limitations to everyday life imposed by these changes. Previous coping strategies to manage stress or worry may no longer be available. Some people experience worry and anxiety related to their memory and attention problems as they find it difficult to keep track of plans, what they have done or where they have put things.

Depression

Depression is common response to the life changes that occur following encephalitis. Low mood and symptoms of depression may reflect the difficulty of achieving personal goals or a changed ability to take part in their usual activities, including work or social groups. A person may mourn the end of a relationship, the inability to pursue a former active social life or chosen career, or changes to family roles and capabilities. Feeling sad is distinct from the pervasive low mood associated with depression.

Changes in sense of self

A greater understanding of the psychological reaction to encephalitis can lead to the development of techniques to help people begin to make sense of these changes and have a better social outcome. Following encephalitis many people experience a change to their sense of who they are. This may be due to changes in what they are able to do at home, at work, at school or with their family or friends due to the direct effects of the illness. There may be a discrepancy between ‘who I was’ before my illness compared to ‘who I am now’. It has been suggested that the more a person perceives a discrepancy between who they are now and who they were before the illness, the higher the level of emotional distress such as low mood or anxiety.

Impulsivity and disinhibition

Impulsive and disinhibited behavior can manifest in a number of ways. The person may appear to lack ‘tact’ after encephalitis. They may be less discriminate in their choice of sexual partners, or engage in risky practices that were not characteristic of them prior to this illness. Alternatively, there may be a problematic use of drugs and alcohol.

Physical difficulties after encephalitis

Fatigue

Fatigue is a common symptom after encephalitis with many patients describing fatigue as being one of most disabling symptoms of their after-effects (acquired brain injury). Fatigue is closely linked to sleep disturbance and other consequences such as cognitive, emotional and behavioral difficulties. Fatigue may be a direct result of injury to the brain or be caused by the increased ‘neurological effort’ required to compensate for lost skills and abilities.

Fatigue after an acquired brain injury (ABI) is different to fatigue due to other causes in that

• it has a sudden onset post brain injury
• it is intense
• it has more than one component, including cognitive, physical and emotional aspects
• it can only be ameliorated by mental rest and/or sleep

Even activities which are considered to be relaxing such as reading a book or watching television can be tiring for a person that experiences neurological fatigue following acquired brain injury. Fatigue can have a huge negative impact on overall quality of life and tends to exacerbate other problems. It can result in anxiety, depression, guilt and anger, making return to work/education and participating in social activities sometimes impossible.
Headaches and pain

Headaches are common following an acquired brain injury which may result from encephalitis. Scientists don’t know for sure why it happens. Headache, for example, may happen because of stress and tension, when the person tries to do too much, or may be a sign of anxiety. Cognitive and behavioral functioning of an individual are influenced by pain. Pain is also associated with depression. It is important to notice pain characteristics such as start, duration, location, triggers, as well as any psychological factors and relief indications.

Seizures/Epilepsy

Seizures are common during the initial stages of encephalitis, when people are typically quite unwell in hospital. In some instances, they can be quite difficult to bring under control and may need a period in the intensive care unit.

Seizures may also occur at a later stage, well after the acute illness is over. This is because the after effects of the inflammation of the brain in encephalitis may leave the brain cells more likely to produce the bursts of abnormal synchronized activity which cause seizures. When seizures occur in the absence of a precipitating factor (such as the acute infection), they are known as ‘unprovoked seizures.’ Epilepsy is defined as a tendency to experience recurrent unprovoked seizures.

Many patients who go on to develop epilepsy after encephalitis will have had seizures during their acute illness and then continue to have unprovoked seizures after they have recovered. They have evolved from acute symptomatic seizures to epilepsy without any period of freedom from seizures in between. However, others may not have had seizures at all during the acute illness or may have had some seizures which settled, but then go on to have unprovoked seizures (epilepsy) at a later stage after the encephalitis. Although this most commonly occurs within the first year or two after the encephalitis, seizures may begin much later in some people.

Difficulties with movement, balance and coordination

Problems with mobility and balance can occur following encephalitis due to paralysis and weakness in limbs, dizziness and/or vestibular problems. Difficulties with movement can also be related to ‘apraxia’, which involves problems with translating ‘intention’ into effective ‘action’. People may appear to be clumsy or unstable on their feet.

Problems with speech and swallowing

Difficulties with speech production may be caused by damage to the muscles involved in speech (dysarthria), difficulties saying what one wants to say (dyspraxia) or a combination of the two. As a consequence speech may appear to be unusual, including sounding ‘slurred’ or ‘slow’. It is also possible for the muscles involved in swallowing to be affected following brain injury (dysphagia). For some this is associated with an increased risk of choking.

Incontinence

Incontinence can happen following encephalitis for a variety of reasons, and can have a significant impact on social life.

Sensory problems

Sensory problems following encephalitis are many and varied and include difficulties with perception of visual (colour, shape, size, depth, distance) and auditory information (sound), as well as smell (anosmia which is partial or total loss of smell), taste and touch (relating to pain, pressure and temperature). People may experience ‘pins and needles’, difficulty gauging ‘hot’ and ‘cold’.

Hormonal imbalance

Mood swings, depression and impulsivity can sometimes be a symptom of hormonal imbalance rather than emotional and behavioral problems. This is because a brain injury may cause damage to structures in the brain that regulate hormones. There are many symptoms that might be experienced by a changes in hormone levels, and each is caused by a change in the particular hormone being produced by the pituitary gland. Some of the symptoms include: depression, sexual difficulties, headaches, fatigue, visual disturbance, weight gain, muscle weaknesses, reduced body hair, changes in skin texture, fatigue, mood swings, and difficulty regulating body temperature.

Social consequences of encephalitis

Following encephalitis, it is common for people to experience changes in their thinking, behavior and feelings. These changes may make it difficult to take part in everyday activities such as work, driving, running a household, or making plans with friends or family.

Inability to drive

Driving involves many more complex skills than simply the mechanical ability to drive a vehicle. Concentration difficulties, memory problems, difficulties in learning, a slowed response to situations and emotional problems are all common after encephalitis and may affect the ability to drive. In some cases more obvious physical or visual impairments or seizures may pose significant difficulties for those who want to return to driving.

Inability/difficulty to return to work

Following encephalitis some people may find they are able to return to their occupation with little or no adjustment. However for others, return to work is big challenge and sometimes impossible. Returning to work can be hampered by many things, such as memory problems, tiredness, mood swings, behavioral constraints, reduced organizational skills, finances, personal or family worries and stress, prejudices of potential employers etc.

Financial difficulties

Being in hospital, caring for or visiting somebody in hospital, not being able to go back to work and insurance problems may impact on people’s finances. This can add at the stress brought up already by the illness and its consequences.

Altered family relationships

Encephalitis may have an impact on family relationships. All families are different, but no matter how well a family is functioning, there may be major challenges ahead. Initially there may be relief that a loved one has survived the illness but the person themselves may have little or no recollection of the illness. This can bring up a conflict of feelings with relief and joy on one side, and confusion, even anger, on the other, as the person affected finds that they are less able to function as they once did.

When encephalitis affects a family, its coping strategies will be tested. Spouses may feel isolated and trapped as roles are reversed and relationships put under strain. Children may also experience emotional problems and sometimes their needs can be overlooked. Extended family and friends often want to help but don’t know how. Accepting the situation can help, however this is not always easy and may be difficult to achieve. Not all families have good relationships and sometimes the sudden impact of encephalitis adds to already strained relations. Typically families will go through a process of coming to terms with the consequences of the illness then finding ways of coping.

Encephalitis symptoms

Infectious encephalitis

Infectious encephalitis usually begins with a ‘flu-like illness’ or headache. Typically more serious symptoms follow hours to days, or sometimes weeks later. The most serious finding is an alteration in the level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness and coma. Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness or uncharacteristic behavior.

Most people with viral encephalitis have mild flu-like symptoms, such as:

• Headache
• Fever
• Aches in muscles or joints
• Fatigue or weakness

Sometimes the signs and symptoms are more severe, and might include:

• Confusion, agitation or hallucinations
• Seizures
• Loss of sensation or paralysis in certain areas of the face or body
• Muscle weakness
• Problems with speech or hearing
• Loss of consciousness

In infants and young children, signs and symptoms might also include:

• Bulging in the soft spots (fontanels) of an infant’s skull
• Nausea and vomiting
• Body stiffness
• Poor feeding or not waking for a feeding
• Irritability

Autoimmune encephalitis

Autoimmune encephalitis often has a longer onset. Symptoms will vary depending on the type of encephalitis related antibody but may include: confusion, altered personality or behavior, psychosis, movement disorders, seizures, hallucinations, memory loss, or sleep disturbances.

Encephalitis diagnosis

Your doctor will start with a thorough physical examination and medical history.

Your doctor might then recommend:

• Brain imaging. MRI or CT images can reveal any swelling of the brain or another condition that might be causing your symptoms, such as a tumor.
• Spinal tap (lumbar puncture). A needle inserted into your lower back removes cerebrospinal fluid (CSF), the protective fluid that surrounds the brain and spinal column. Changes in this fluid can indicate infection and inflammation in the brain. Sometimes samples of CSF can be tested to identify the virus or other infectious agent.
• Other lab tests. Samples of blood, urine or excretions from the back of the throat can be tested for viruses or other infectious agents.
• Electroencephalogram (EEG). Electrodes affixed to your scalp record the brain’s electrical activity. Certain abnormal patterns may indicate a diagnosis of encephalitis.
• Brain biopsy. Rarely, a small sample of brain tissue might be removed for testing. Brain biopsy is usually done only if symptoms are worsening and treatments are having no effect.

Encephalitis treatment

Encephalitis needs to be treated urgently. Treatment involves tackling the underlying cause, relieving symptoms and supporting bodily functions.

It’s treated in hospital – usually in an intensive care unit (ICU), which is for people who are very ill and need extra care.

How long someone with encephalitis needs to stay in hospital can range from a few days to several weeks or even months.

This depends on how well treatment works and if any complications of encephalitis occur.

Treating the cause

If a cause of encephalitis is found, treatment to deal with this will start immediately.

Possible treatments include:

• antiviral medication – used if encephalitis is caused by the herpes simplex (aciclovir for herpes simplex encephalitis) or chickenpox viruses; it’s usually given into a vein three times a day for two to three weeks
• steroid injections – used if encephalitis is caused by a problem with the immune system and sometimes in cases linked to the chickenpox virus; treatment is usually for a few days
• immunoglobulin therapy – medication that helps control the immune system, which may be needed if steroids don’t help
• plasmapheresis – a procedure which removes the substances that are attacking the brain from the blood, which may be needed if immunoglobulin therapy doesn’t help
• surgery to remove abnormal growths (tumors) – done if encephalitis was triggered by a tumor somewhere in the body
• antibiotics or antifungal medication – used if encephalitis is caused by a bacterial or antifungal infection

If there’s no treatment for the underlying cause, treatment is given to support the body, relieve symptoms, and allow the best chance of recovery (see below).

For some types of encephalitis there is no specific treatment aimed at the cause (e.g. West Nile encephalitis). Secondly, treatment is aimed at the symptoms and complications arising from encephalitis (e.g. seizures, agitation) and to support the patient whilst they are not able to perform their usual bodily functions (e.g. ventilation, insertion of a urinary or a feeding tube).

Other treatments

Encephalitis puts a lot of strain on the body and can cause a range of unpleasant symptoms.

Most people need treatment to relieve these symptoms and to support certain bodily functions until they’re feeling better.

This may involve:

• fluids given into a vein to prevent dehydration
• painkillers to reduce discomfort or a fever
• medication to control seizures (fits)
• medication to help the person relax if they’re very agitated
• oxygen given through a face mask to support the lungs – sometimes a machine called a ventilator may be used to control breathing
• medication to prevent a build-up of pressure inside the skull

Occasionally, surgery to remove a small piece of the skull may be needed if the pressure inside increases and medication isn’t helping.

Some of the drugs (e.g. steroids) have potential side effects but also important benefits. In each patient the risk-benefit balance may vary, so the choice of treatment depends on each individual case. It is important that the treatment is started promptly, sometimes before a definite cause is found, as delay in treatment can be associated with unfavorable outcomes.

Sometimes a patient may be placed in an induced coma which is a temporary coma brought on by a controlled dose of drugs to shut down the brain and allow time to recover from the swelling caused by encephalitis. The doctors decide the length of the coma depending on the extent of injury and the way the patient reacts.

During and after the acute phase of encephalitis the patient may be uncharacteristically uncooperative, aggressive and even violent (acute confusional state). During this time, the patient is not aware of their behavior or the impact it has on those around them or able to control it. When in this state, patients benefit from a ‘low stimulation’ environment. This means a quiet environment in which noise (e.g. from the television or telephone), and visits from others are minimized.

Recovery and rehabilitation after encephalitis

The brain takes much longer to recover from an injury than other parts of the body such as muscles, bones and skin. Recovery can be a long and slow process and should not be rushed. The main aim of rehabilitation is to help the person affected by encephalitis develop new skills, habits and strategies for coping with their remaining difficulties. Depending on the nature of the person’s problems, rehabilitation may range from residential programs to home-based client services. The needs of each patient are unique and multiple. No two patients have the same outcomes. Input from various professionals, tailored to the individual needs is necessary (neuropsychologist, educational psychologist, occupational-therapist, speech and language therapist, physiotherapist, psychiatrist, dietician and/or nurses specialist).

Encephalitis is a family affair

Coming to terms with the problems left by encephalitis can be potentially distressing and challenging for everyone concerned. Unlike other parts of the brain, you cannot see the brain injury or repairing. People assume all is back to normal when in fact some areas are still in recovery. Encephalitis can be described as an invisible disability which affects not only one person, but the whole family. Emotional support for the whole family may be needed.

Initially, there may be relief and joy that the person affected has survived. Later, when it becomes evident that the person cannot function like they did before the illness, there may be a sense of loss and grief. Everyone deals with grief in their own way and time. Whilst it is important to acknowledge the loss and allow time to grieve, support from family, friends and professionals can make all the difference.

Connect with people

Social interaction helps to manage stress and feelings of depression and also stimulates brain development. It is important for people to re-connect with their previous social roles. If friendship patterns change after encephalitis, it is important to consider new avenues for social involvement. When the time is right, there may be local groups to join and opportunities to do voluntary work. Group memberships, e.g. a sports team, church choir, or book club, act as sources of both practical and emotional support.

Peer support through talking to others who have been affected by encephalitis can be a positive way of making sense of feelings and life changes. Reading stories of other people who have experienced encephalitis is also often useful. Other people’s stories can provide hope that there is life after encephalitis, by providing tips about different ways of coping and finding meaning in the experience. Some people prefer not to read stories. There is always a risk that the story may not be what people expect or that people may experience negative feelings about their own recovery as a consequence. Before reading, it is important to consider whether the time is right. Stories may be of benefit at a later stage in your recovery than in the immediate aftermath of experiencing encephalitis.

Guidelines for recovery

The long-term prognosis for people affected by encephalitis varies considerably. In some instances, people come through the illness with little or no consequences. In others, people have different degrees of life-long difficulties. Some of those people are discharged in rehabilitation units. Some are discharged at home having being referred to community services. Others are discharged at home with no follow-up plan or waiting referrals.

How long does the recovery take?

Recovery from encephalitis may take time. Initial recovery may be rapid but usually falls short of complete. Further recovery takes place more slowly over a period of months, even years. People are different. No two cases of encephalitis will have an identical outcome and people recover at different paces.

It is not uncommon for problems to manifest more at home as you try to get back to normal life. Some of these features may be subtle when in hospital and indeed not really elaborated on or explored. The danger is that these problems may be misattributed to factors such as ‘stress’ rather than the complicated effects associated with the brain injury.

Helping your recovery at home

Pacing

Recovery can be helped by a structured timetable where activities (physical and mental) are interrupted by periods of rest. Initially rest periods should be long and activity periods short. As the recovery takes place, activities can become longer and breaks become shorter.

Good nutrition

Nutrients that are especially important are antioxidants (found in fresh fruit and vegetables) and omega 3’s (found in fatty fish or flax seed oil).

Rehabilitation after encephalitis

During the early days, weeks or months after encephalitis, the main aims are to provide a safe environment and gentle stimulation to encourage the process of spontaneous recovery. In the later stages, when spontaneous recovery slows or stops, the main aims are to help the person affected by encephalitis develop new skills, habits and strategies for coping with their remaining difficulties. People affected by encephalitis may be left with cognitive, physical, emotional, social and self-care problems, the most common being impairments in reasoning, motivation, self-control, memory and concentration.

Depending on the nature of the person’s problems, rehabilitation may range from residential programs to home-based client services. However, currently, many people affected by encephalitis are discharged without adequate assessment or consideration of their rehabilitation needs.

As people affected by encephalitis progress in their rehabilitation, more challenging and less supported environments are required. Ideally, such progression should lead to the least restrictive situation in which the person affected by encephalitis can cope successfully. For many, this will mean some ongoing support to help maintain the gains they have achieved.

Good rehabilitation is a holistic approach. It recognizes the complex cognitive, behavioral, social, emotional and medical problems faced by people affected by encephalitis and their families. It is a practical approach using the strengths of the person to develop coping abilities. It is also an educational process which helps the individual develop adaptive strategies for coping. Training in the use of compensatory aids and systems to help reduce the loss and encourage independence is a central component.

What can rehabilitation do?

Rehabilitation can:

• provide coping skills and greater independence in everyday life
• reduce the restrictions caused by cognitive impairments
• help reintegration into the community and family life
• improve emotional adjustment
• develop social skills and re-integration
• improve motivation
• improve decision making skills
• improve self-control
• improve insight and awareness
• develop physical and mental stamina
• help and support families to cope
• improve the quality of life

What CAN’T rehabilitation do?

Rehabilitation CAN’T:

• return the person to the way they were before
• ‘cure’ intellectual problems
• help the person cope with any demand placed on them
• take away the distress and heartache caused by the injury
• provide long-term support (although many brain injury rehabilitation services are now linking with long-term support services)

What happens during rehabilitation?

Rehabilitation activities

The person will be engaged in a range of activities related to their particular difficulties within safe and supported environments. Tasks may include social activities, vocational activities, self and home-care activities, recreational activities, etc. They are likely to range from basic hygiene training to money management. Initially, the activities may occur within a safe learning environment, then later practised in the community. Eventually, the rehabilitation should help the person transfer these adaptive skills to their home. Such everyday activities provide the vehicles for developing more adaptive coping strategies and introducing systems and aids that permit the person affected by encephalitis to be more successful. In the early stages of rehabilitation, the persons’ activities may need to be very structured and organized. In later stages, the person might be expected to plan and organize their own activities.

The person affected by encephalitis should be helped to develop habits, systems, procedures and aids to compensate for their difficulties accomplishing their daily activities, thereby reducing the need for reminding, prompting, explanation or supervision. Perhaps the most effective ways of learning after encephalitis is by ‘doing’ (and doing well). Post-acute brain injury rehabilitation programmes should promote achievable goals that provide encouragement and success to the person affected by encephalitis. The more realistic the tasks and environments are to the persons individual needs, the more effective the rehabilitation. Therefore, rehabilitation services should provide realistic settings where people can develop relevant skills which are transferable after they leave the rehabilitation center.

It is unlikely that the rehabilitation programme will be with many other people that have had encephalitis. Usually the service will be providing for the needs of people with head injury, stroke and other forms of acquired brain injury. However working in a group with people with similar levels of ability/difficulty can be important and helpful.

Adaptive skill development (learning new tricks)

Rehabilitation programs also aim to help develop problem solving, decision making, planning and awareness. Individual or group therapy sessions may be used for the training of these skills; however, the lessons learned in these ‘clinical’ sessions need to be practised in everyday life to be most beneficial.

Developing ways of coping with anxiety, impulsivity, apathy, fatigue, depression, anger, embarrassment, grief, mood swings and other emotional problems are central aspects of acquired brain injury rehabilitation. The person might be involved in counseling, cognitive therapy and/or behavioral learning therapies. Behavioral therapies use the retained learning abilities of the person affected by encephalitis to help shape self-control, motivation and adaptive habits.

Learning to use aids and well-rehearsed procedures habitually is a central core of brain injury rehabilitation. Tasks that might be impossible for the person affected by encephalitis might be made possible by:

• approaching the task in another way
• by using external aids (especially for memory, attention, organization, and sequencing)
• by seeking help for elements of the task

Developing insight and awareness by a combination of counseling, feedback, cognitive therapy, self-monitoring or structured experience is one of the key factors in successful rehabilitation. Unfortunately, many people affected by encephalitis do not learn from mistakes but rather learn to repeat those mistakes and explain them away. A success-laden program of rehabilitation is therefore required because clients are more likely to learn from their successes.

Rehabilitation can be a very long journey. People can continue to benefit from specific interventions even years later. Sometimes people need to be ‘ready’ to take on new information and tricks. They may be resistant to advice and that itself may require careful work. This is why a skilled speech and language therapist (SALT), occupational therapist (OT), or psychologist is essential to overcome this problem. There is a pervasive myth that there are (e.g, 2 years) limits to when people can benefit and this is why it is worth seeking advice from specialists.

Clinical services

Acquired brain injury rehabilitation requires expert staff. Clinical neuropsychology, occupational therapy, speech and language therapy, physiotherapy, general medicine, psychiatry, counseling and family support services should be expected as standard.

How can you be referred to rehabilitation?

Your doctor

The doctor represents the first line of health support. Since many people affected by encephalitis are discharged directly to their home, the physician becomes the most important link with health care services. However, in the majority of cases physician’s have little experience of encephalitis or rehabilitation services. Providing the physician with explanation of the problems presented by the person affected by encephalitis and requesting assessment for rehabilitation can often initiate appropriate referral to rehabilitation support services or funding for rehabilitation in the private sector.

Neurologist

Encephalitis is a neurological condition. People affected by encephalitis have to be treated and assessed by a neurologist. The majority (but not all) will know of acquired brain injury rehabilitation services.

Neuropsychologists

Not everyone with encephalitis is assessed by a specialist neuropsychologist, although perhaps all should be. Neuropsychologists provide a specialist assessment of the functioning of the individual and can advise as to appropriate rehabilitation services.

Social workers

An assessment of need by the social services is a statutory right for every disabled person.

Self-referral

It is often possible to approach services directly and ask for advice and possibly refer your relative directly.

Managing memory problems after encephalitis

The long term effects after encephalitis may be characterized by cognitive and behavioral changes which may have a significant impact upon psycho-social functioning and return to an individual’s previous level of functioning.

Memory problems and the temporal lobe

The most common form of infectious encephalitis results from the herpes simplex virus. If you look at the brain of someone who has suffered herpes simplex encephalitis, it is almost inevitable that there are some damages to the temporal lobes of the brain. It is well-established that the temporal lobes are actively concerned with forming new memories (a process known as consolidation) and storing memories. Temporal lobe systems are also responsible for remote memory and semantic memory (our facts and understanding of the world). This explains why memory loss is the most frequent and often most disabling effect of encephalitic illness.

Other types of encephalitis, whether viral, bacterial, post infectious or auto-immune, may also involve the temporal lobes to varying degrees with accompanying memory changes. Depending on the circuits within the temporal lobes affected by the encephalitis illness, a survivor may have:

• difficulty remembering new information (e.g. the name of his or her doctor, details of a conversation)
• what they have to do (e.g. attend a hospital appointment or take their medication)
• events before their illness (e.g. family holidays).

Confronted with someone who has memory problems following encephalitis, it is very important to remember that not every aspect of memory is affected. Thus, although most people will have marked difficulties in remembering what has happened and what is going to happen, they will usually remember people and facts they learned some time before they became ill. Skills, such as typing and swimming are usually unaffected and language also survives fairly well. However, some deficits, particularly word finding problems, may sometimes be encountered.

A neuropsychological assessment can be useful to gain a better picture of what aspects of memory and cognition have been affected by encephalitis, to then develop a rehabilitation plan to manage everyday problems.

Practical steps in managing memory problems

There are several straightforward practical steps that can support the everyday activities of someone with memory problems post-encephalitis:

• Use labels on doors to indicate where household things are located (e.g. which cupboards are for crockery, food etc.).
• Place a written sign by the front door, such as ‘don’t forget your phone’ to remind a person to take items with them as they leave the house. Motion sensitive reminders can be purchased to provide an audio reminder to take belongings.
• Use a prominent wall chart to indicate the date and any events that are taking place that day/week. Effective use of this wall chart can reduce the amount of repetitive questioning that sometimes occurs when people have a memory impairment. It can also increase self-reliance.
• Use a diary and written notes to remember future events and to recall what has happened in the recent past.
• Try to make things/places distinctive if the person has problems finding them. The toilet, for example, can be made easier to find by painting the door a different color to the other doors. Alternatively, the path to it can be marked with distinctive masking tape.
• Put a flow chart on the wall giving instructions about which places to look for things if the person habitually misplaces them (e.g. glasses). Try to leave items in set places.
• Try to maintain a regular routine. People with memory problems may become quite unsettled if these routines are interrupted.
• Organize the environment so it is structured and uncluttered; keep things in the same places as much as possible. This will enhance the possibility of the person learning where things are.
• Keep a notepad by each telephone/visible places in the house so that the person can take messages.
• Display photographs of family and friends prominently and label them with their names.

The above are all things you can do without any specialized help but more is possible if you seek the professional help of a psychologist or occupational therapist who is able to help by matching an individual’s memory needs with available compensatory aids and strategies.

Memory aids

The use of memory aids seeks to improve everyday memory function by compensating for changes in memory function. This approach acknowledges the memory problems and then attempts to work around the problem to improve independence. With the benefits of modern technology there are now a large number of electronic memory aids on the market such as:

• Smart phones. In addition to making calls or sending text messages, most smart phones have a calendar, diary and alarm function. Some will synchronize with a home-based computer to access information and reminders. There are also both Apple and android operating systems for the provision of numerous ‘apps’ with great potential to support people with memory problems. However, some of these functions may be quite complex and require additional training to help support memory problems.
• Watches that beep every hour and train the person to consult a daily schedule whenever the watch beeps (e.g. at 11 am put the oven on for lunch). However, these watches display a limited amount of information at a particular time point.
• ‘Pill reminding’ devices.
• A pager called NeuroPage has been shown to reduce the everyday problems of many memory impaired people. With the collaboration of the person with memory problems, a personal reminder is sent to a portable pager at set times throughout the day.

Memory aids have great potential to support the everyday functioning of people with memory problems following encephalitis. Specialized training and support in how to use memory aids to address specific memory difficulties is recommended to ensure consistent and long-term use. A clinical neuropsychologist, clinical psychologist or neuro-occupational therapist is able to help train the use of a range of memory aids to meet individual needs.

Using the remaining memory more effectively

Memory is not like a damaged muscle which, with appropriate exercise, can be made strong again. Memory loss arises because brain cells, connections and systems have been irreparably damaged and repeated practice or drills do not restore memory function. A different approach is to try and teach the person strategies for using their remaining memory abilities more effectively. There are strategies to help people remember some information more efficiently. Thus, it has been shown that people can improve their memory for text by using particular study techniques and that a range of other memory aids can also be effective. Because it is difficult for people with memory problems to remember to use these strategies spontaneously, it is often family members or therapists who devise and work through these strategies or mnemonics. Their value lies in the fact that people learn things more quickly when using these strategies than when simply repeating things without a strategy.

Memory groups

In these groups people often try out new strategies for remembering things and generally discuss their problems. There is evidence that people attending memory groups gain support and have a more positive mood even when there is no direct change in their memory ability. The group provides an environment where people can discuss problems with others who understand from first-hand experience the specific difficulties encountered. The participants experience feelings of relief when they discover that their problems, both memory and emotional, are shared. Another benefit is that that strategies and advice may be better received coming from other survivors than from carers or medical professionals.

Memory and the use of a computer

While strategies may be of some help many psychologists believe that memory rehabilitation can only be effective if it targets specific needs. One area, in particular, is that of learning to use a computer. Recently a number of studies have shown that even severely impaired people can be taught how to use computers and, in some instances, this training has enabled the person to resume employment. At first, it might seem paradoxical that someone who is unable to remember anyone’s name should nevertheless learn to operate a computer. The explanation is that learning how to use a computer partly relies on a form of memory that is usually unaffected by brain damage. Thus, although learning is slower, and less comprehensive than that obtained by non-injured people, it can proceed to a point where the person has acquired enough knowledge to work independently. Training will require support from a specialist clinical neuropsychologist or neuro-occupational therapist and can be time consuming.

Errorless learning

Up until recently it was usual practice to encourage a memory-impaired person to guess if they did not know the answer to a question. Recent research does, however, question this approach because what happens is that the person tends to keep remembering their incorrect guess rather than the correct answer. This has given rise to a new form of training which is called ‘errorless learning’. In this training the person is exposed to the answer a number of times before being asked to remember it thus greatly reducing the possibility of an error being generated. Studies in many countries have shown the method to be effective for teaching people to remember names, directions, how to operate a personal organizer and other skills. There is strong evidence that avoiding errors during learning leads to better learning in people with severe memory problems so the basic message is clear: if you are trying to teach a memory-impaired person something, avoid them making errors at all costs. You can only benefit from your mistakes if you can remember the mistakes.

Similarly there is growing evidence that repeated practice is helpful to learn new information if this is done over a number of days in a practical manner as opposed to attempting to cram new information.

Managing fatigue after encephalitis

Following encephalitis, it is common for people to experience fatigue. Fatigue is an overwhelming feeling of tiredness. Some people describe fatigue like ‘hitting a wall’. Fatigue has a huge impact on people’s lives as it interferes with everyday tasks.

Assessment

Fatigue is considered a condition in its own right when it is not relieved by adequate rest, sleep, or removal of stressful factors. Fatigue that is not relieved by normal means, or that occurs in the absence of a known cause or other symptoms, should be fully assessed by a responsible medical person or team. A detailed assessment of fatigue will involve gathering information to detect any pattern of the fatigue which may give clues to its underlying cause. A physical examination may also take place.

The assessment may investigate:

• Sleep pattern
• How much do you sleep?
• What hours do you sleep?
• Do you awake feeling rested or fatigued?
• Do you have a history of sleep problems, even prior to encephalitis?
• Course of fatigue over time
• Does the level of fatigue remain constant throughout the day?
• Does fatigue get worse as the day goes on?
• When did you first experience the fatigue?
• Does fatigue occur in regular cycles?
• Mood
• Do you feel low and sad?
• Are you hopeful about your current situation?
• Do you feel wound-up or on edge?
• Are you bothered by worries that you can’t get out of your head?
• Other
• Current levels of activity and any recent changes
• Current level of exercise
• Quality of relationships
• Current diet
• Presence of other symptoms, such as pain
• Current medications

A ‘fatigue diary’ can be a useful way to gain a better understanding of energy levels across the day and across a week. This is a record of levels of fatigue and daily activities. It may include a rating of the intensity of the fatigue and should include information on sleep and medication.

A ‘fatigue diary’ may include:

• what do you do each day and when
• a rating of energy at particular times or after activity
• caffeine intake (e.g. coffee, tea, soft drinks)
• medication, particularly stimulants and/or tranquilizers
• general nutrition
• any additional pain problems

Management of fatigue

With a better understanding of the causes of fatigue and the pattern of energy across time, the following suggestions may be helpful. Please note that a professional assessment is recommended to develop an appropriate and individualized management plan.

There are two main ways of tackling fatigue problems: general lifestyle changes and a specific treatment plan. There are also ways to improve sleep that could have a positive effect on fatigue.

Lifestyle changes

• Manage your time by re-setting priorities with the aim of maintaining a reasonable schedule of activities.
• Act to reduce work hours and/or level of personal commitments.
• Have relaxation and/or rest periods.
• Develop good sleep habits.
• Maintain a balanced healthy diet.
• Practice regular exercise (within prescribed limits).
• Reduce intake of stimulants both prescribed and non-prescribed, including caffeine.
• Reduce alcohol intake as this may affect the quality of sleep.

Structured Treatment

A rehabilitation program may advise the following:

• Keep a ‘fatigue diary’—a record of daily activities and energy levels. If a pattern of fatigue across the day emerges, plan important activities at times of peak energy. Be aware of the pattern of fatigue across a week and, again, plan activities according to peak energy levels. For example, do not plan an important meeting or appointment after a late night with a family commitment.
• Plan rest periods. However, try to avoid sleeping for extended periods late in the day as this may have a knock-on effect of difficulty sleeping at night.
• Try to avoid concentrating for extended periods and take breaks throughout the day. In addition to lying down, this might involve doing something quite different, stepping outside for some fresh air or listening to some pleasant music. Use memory and organizational supports to keep track of what you were doing.
• It is important to resist the urge to keep going and plan breaks throughout the day. During these breaks, stop and rest. Various alarms and/or smart phone apps can be useful to prompt you to take a break.
• Pace yourself and be patient. Improvements in stamina may not always be an upwards journey. Expect good days and bad days.
• Psychotherapy with a registered psychologist may be useful to manage symptoms of depression, stress or anxiety that are making the fatigue worse.
• Similarly, cognitive rehabilitation should address cognitive changes in memory, concentration or problem solving with the aim of developing strategies to support everyday function and reduce cognitive effort.

Getting better sleep

Fatigue is often associated with a poor sleep pattern. The following may be helpful to improve the quality of sleep:

• Have a regular routine; go to bed and get up at roughly the same time each day.
• Avoid drinks with caffeine (tea, coffee, soft drinks) after 5pm. Do not drink alcoholic drinks excessively. Both alcohol and caffeine may disrupt sleep.
• Do something relaxing before you try to go to sleep e.g. listening to music, meditation, relaxation techniques. Watching television, reading, using a smart phone or tablet may be stimulating for some people and make it hard for them to switch off at night.
• If you have things running through your mind, write them down before you go to bed.
• If you must rest during the day, have brief naps of about 30 minutes and not late in the afternoon.
• If you are not asleep after 15-30 minutes, get up out of bed and do something relaxing until you feel sleepy. Tossing and turning, trying to get to sleep may increase frustration and make it even harder to sleep.
• Try to spend time outside every day.

Managing anger after encephalitis

Encephalitis may lead to emotional and behavioral changes, including problems managing anger. These changes can be a direct consequence of damage to the emotional and behavioral control centers in the brain or an indirect psychological reaction to the other difficulties (e.g. cognitive, fatigue, epilepsy). Difficulty controlling anger may reflect an exaggeration of an individual’s pre-illness personality or it may be totally new for the person affected.

Managing anger

It is important to gain a better understanding of an individual’s anger management problems with a detailed assessment with a clinical psychologist or clinical neuropsychologist. This assessment can identify possible internal triggers of anger outbursts, such as any cognitive difficulties, mood or anxiety issues. A complete assessment of an individual’s difficulties will take into account the relationship between physical, cognitive, emotional and social changes post-encephalitis.

With professional support, anger may be managed by:

• identifying trigger situations and the signs of anger
• putting in place brief strategies such as breathing or distraction, leaving the situation safely
• reflecting and learning after the episode

Some people may find a course of psychotherapy with a counselor or psychologist helpful to manage their anger.

The following acronym may be helpful to manage anger outbursts:

A – Anticipate situations that trigger anger. Record where, when, why, with whom it happens. A structured approach to problem-solving may then help to diffuse the anger that occurs with these situations.

N – Notice signs of anger building. Early tell-tale signs may include irritation, feeling tense, heart racing, breathing more rapidly.

G –  Go through a ‘temper routine’ which may include:

• distraction (e.g. counting to 10)
• taking three deep slow breaths
• a personal self-statement (e.g. “let it go”, “these feelings will pass”)

E – Extract yourself from the situation. Have a set place to go to or take a quick walk outside if possible.

R – Record how you coped, note what worked, keep a record to chart any change in behavior over time.

It is also useful to develop strategies to manage general levels of stress and frustration. This may include regular exercise, psychotherapy, meditation, listening to music or relaxation training. Change in communication style may also help to manager anger outbursts. For example, role plays, anticipation of trigger situations and the use of cue cards may help a person to stop, listen and not misinterpret what is being said to them. Professional support may help an individual to express their needs without acting inappropriately through anger.

Depression after encephalitis

Everyone ‘feels low’ sometimes, but depression is different to these ‘normal’ feelings of sadness. Someone becomes depressed if these bad feelings don’t go away, or become so bad that they stop them from doing everyday things like eating or taking care of themselves. People may experience:

• sadness a lot of the time
• exhaustion or restlessness
• not finding anything enjoyable
• problems with sleep
• losing appetite and weight
• reduced sex drive
• difficulties concentrating
• bad feelings about yourself or your future
• thoughts of self-harm or suicide

Depression can last several months. Most people get better, but it is common for depression to recur. This is why it is important to get medical help if you think you or someone you know is depressed.

Why does depression occur after encephalitis?

Depression is very common even without encephalitis—one in five people will get depressed at some point in their lives. After encephalitis, feelings of grief and despair often occur as part of a normal reaction to the loss of previous life style and relationships. This type of mood change should ease over time as people adjust to their new circumstances. However, sometimes they do not ease. Or sometimes people can feel depressed a long time after they have survived encephalitis.

Chances of becoming depressed are increased after encephalitis. This is because:

• encephalitis can injure the brain making it more vulnerable to depression,
• encephalitis can cause disabilities that can be difficult to adjust to and/or
• encephalitis can cause other problems, for example losing your job, and that can make it difficult to cope and affects how someone views themselves.

It can be difficult to separate out the direct effects of encephalitis from depression. For example, encephalitis can cause problems with thinking, changes in the ability to initiate activities, difficulty with reasoning, memory problems and fatigue. Many of these changes are similar to those that occur in depression. It can be quite hard to tease out what changes are due to cognitive changes, and what are due to emotional factors. Often people who are felt to be depressed are offered treatment (for instance medication or counseling) when in fact advice on the brain injury and how to deal with the problems it causes might be a more effective intervention.

At the same time, emotional difficulties can sometimes be mistaken for cognitive problems due to brain injury. Sometimes, a more marked depression begins to occur as the injured person’s insight and awareness of the new situation grows. It results from a realization that life might never be the same as it was before. The depressed person may often be unable or unwilling to talk about their feelings or seek outside help. It is important to try to get to the bottom of this, if necessary with the help of professional advice. Especially when depression may impact upon a person’s rehabilitation, or return to their former lifestyle. Depression can be treated with medication, ‘talking therapy’, or a combination of these methods.

Counseling and talking therapies

There are various therapies available from self-help to more intense forms. The type of therapy depends on the consequences of encephalitis people are left with as well as what symptoms of depression they have. Counseling can help because it lets people talk about their feelings to someone who is trained to listen and respond. Many doctors have their own counselor, or can access some locally.

Self-help books and computer programmes can help milder forms of depression. The most effective of these are based on a type of talking therapy called Cognitive Behaviour Therapy (CBT). This helps people change the way they think (cognitive) and the things they do (behavior) so that they feel better. It focuses on how you feel now rather than delving into your past. Other forms of self-help that have been shown to help are gym groups, yoga and meditation.

Anti-depressants

There are many different types of anti-depressants, but the most commonly used are called SSRIs (Selective Serotonin Reuptake Inhibitors) like Lustral® (Sertraline). They have fewer side-effects than the other anti-depressants. All anti-depressants work by changing the activity of certain chemicals in the brain, but the exact way they do this isn’t completely understood yet. They work for moderate to severe depression. There is no good evidence to suggest they work for mild forms of depression.

Taking antidepressants

Anti-depressants generally take about two weeks to start working and 4-6 weeks before they have a significant impact on mood. After three months of treatment, 50-65% of people taking anti-depressants will be greatly improved compared to 25-30% of people taking a dummy pill (the placebo effect is very important in depression, just like in physical types of pain).

Because there is a high risk of depression coming back, it is recommended that people continue taking antidepressants for six months after getting better. This reduces the risk of recurrence. If someone has had two episodes of depression, then treatment should be continued for at least two years.

Common side-effects and other considerations

Most side-effects are mild and not everyone gets them, but they are more common in the first two weeks. Unfortunately the anti-depressants won’t have started working in the first two weeks so it is tempting to stop taking them; but it is important to persevere because after two weeks these side-effects usually settle as your body gets used to the medication. The most common side-effects are nausea, anxiety and headaches. Sometimes, people can get painful indigestion, but this can be settled by taking the tablets with food. An important side-effect to consider is reduced sex drive or impotence. If this happens, talk to your doctor as they can help.

More serious side-effects include difficulties urinating, memory problems, falls and confusion. These are more common in the elderly and should always be discussed with your doctor. In people younger than 18 years there is some evidence that SSRIs increase suicidal thoughts (but not acts of self-harm) so anti-depressants should only be prescribed after discussion with a specialist (a child and adolescent psychiatrist). There is no evidence that SSRIs increase suicidal thoughts in adults, but they are often used in deliberate overdoses so should be monitored well if someone is at increased risk of suicide. SSRIs shouldn’t stop someone driving or operating machinery.

Are the drugs addictive – will I get dependent on them?

None of the anti-depressants used these days are addictive in the sense that alcohol and cigarettes are. People don’t crave them after they’re stopped; but up to a third of people who take SSRIs can develop withdrawal symptoms if they are stopped suddenly. These symptoms last two weeks to two months and include: flu-like symptoms, stomach upset, anxiety, vivid dreams and sensations like electric shocks through the body. These are usually mild but if you are considering stopping the medication it is best to talk to your doctor to stop them gradually.

Talking therapy or anti-depressants?

Talking therapies are effective in mild depression whereas anti-depressants are not. In moderate-severe depression, talking therapies and anti-depressants are as effective as each other, but anti-depressants work quicker. An important point that is often missed is that talking therapies can also cause side-effects like anxiety, but these tend to be milder and less common than with anti-depressants. Some forms of talking therapies can be as good as antidepressants for preventing depression coming back.

How to help yourself

• Talk to someone about how you feel.
• Try to keep active; even gentle exercise like a walk can help.
• Good nutrition is also important.
• Avoid alcohol as it makes depression worse, and also interacts with many drugs.
• Set goals that you can achieve in a short time. Break large tasks into small ones, set some priorities and do what you can as and when you can. When setting goals, start small and go for a quick win. Then use the achieved goal as evidence of the progress being made.
• Refrain from assuming too much responsibility for the time being.
• Try to think good thoughts. Depression often manufactures bad thoughts, whether or not something bad is actually going on.
• Join a local social group such as coffee mornings.
• Contact the Encephalitis Society Team Volunteer or be part of the Society’s Connection Scheme, which can put you in touch with other people with similar experiences (please see the Society’s contact details at the bottom of last page).
• Keep hopeful. Most people get better, and you will probably be stronger for having got through it.

If you are a carer

Acknowledge the uniqueness of the person’s loss, and help them identify their own strengths and assets, no matter how small. Listen to them attentively. Validate how they are feeling while at the same time offering support and encouragement for their future. This can be done by listing concerns on paper and setting goals to overcome them. It is also important to focus on the positive aspects of the recovery and keeping a diary and reflecting back on the progress made, which on a day-to-day basis may be virtually unnoticeable. Be aware of the strain that taking care of someone who is depressed can produce, and take care of your own reactions and feelings.

Suicide

• Take any suicidal talk or behavior seriously. It’s not just a warning sign that the person is thinking about suicide—it’s a Cry For HELP.

Coming to terms with a depressive illness on top of encephalitis is not easy. If you suspect someone may be considering suicide, give them the opportunity to talk and encourage them to tell you about their fears. Don’t be afraid to mention the word suicide in asking how they are feeling. This is not likely to put the thought into their head, but on the contrary, they may be extremely relieved to hear that you understand the severity of their depression.

Most suicidal individuals give warning signs or signals of their intentions. The best way to prevent suicide is to recognize these warning signs and know how to respond if you spot them. If you believe that a friend or family member is suicidal, you can play a role in suicide prevention by pointing out the alternatives, showing that you care, and getting a doctor or psychologist involved.

Major warning signs for suicide include talking about killing or harming oneself, talking or writing a lot about death or dying, and seeking out things that could be used in a suicide attempt, such as weapons and drugs. These signals are even more dangerous if the person has a mood disorder such as depression or bipolar disorder, suffers from alcohol dependence, has previously attempted suicide, or has a family history of suicide.

A more subtle but equally dangerous warning sign of suicide is hopelessness. Studies have found that hopelessness is a strong predictor of suicide. People who feel hopeless may talk about “unbearable” feelings, predict a bleak future, and state that they have nothing to look forward to.

Other warning signs that point to a suicidal mind frame include dramatic mood swings or sudden personality changes, such as going from outgoing to withdrawn or well-behaved to rebellious. A suicidal person may also lose interest in day-to-day activities, neglect his or her appearance, and show big changes in eating or sleeping habits.

Suicide warning signs

• Talking about suicide – Any talk about suicide, dying, or self-harm, such as “I wish I hadn’t been born,” “If I see you again…” and “I’d be better off dead.”
• Seeking out lethal means – Seeking access to guns, pills, knives, or other objects that could be used in a suicide attempt.
• Preoccupation with death – Unusual focus on death, dying, or violence. Writing poems or stories about death.
• No hope for the future – Feelings of helplessness, hopelessness, and being trapped (“There’s no way out”). Belief that things will never get better or change.
• Self-loathing, self-hatred – Feelings of worthlessness, guilt, shame, and self-hatred. Feeling like a burden (“Everyone would be better off without me”).
• Getting affairs in order – Making out a will. Giving away prized possessions. Making arrangements for family members.
• Saying goodbye – Unusual or unexpected visits or calls to family and friends. Saying goodbye to people as if they won’t be seen again.
• Withdrawing from others – Withdrawing from friends and family. Increasing social isolation. Desire to be left alone.
• Self-destructive behavior – Increased alcohol or drug use, reckless driving, unsafe sex. Taking unnecessary risks as if they have a “death wish.”
• Sudden sense of calm – A sudden sense of calm and happiness after being extremely depressed can mean that the person has made a decision to attempt suicide.

If you think you may attempt suicide, get help now:

• Call your local emergency number immediately.
• Call a suicide hotline number.
  • In the U.S., call the National Suicide Prevention Lifeline at 800-273-8255. Use that same number and press “1” to reach the Veterans Crisis Line. Or call the National Hopeline Network at 1-800-784-2433
  • In the UK and Ireland – call the Samaritans at 116-123
  • In Australia – call Lifeline Australia at 13-11-14
  • In other countries – Visit International Association for Suicide Prevention at http://www.iasp.info/resources/Crisis_Centres or Suicide.org to find a helpline in your country at http://www.suicide.org/international-suicide-hotlines.html.

These free helplines are there to help when you’re feeling down or desperate.

They’re open 24 hours a day, every day.

Behavior management in children after encephalitis

Behavioral changes after encephalitis

After encephalitis, children can be left with various and complex needs (cognitive, emotional, fatigue, epilepsy) which may impact on how they behave. Sometimes when behavior changes after encephalitis, it is behavior that was present before the illness but has become more extreme, making it ‘inappropriate’, or it has taken an unwanted form. Difficulties at school and with making friends are likely to make unwanted behaviors worse, increasing your child’s sense of loss and lowering their self-esteem. Also the behavior can sometimes ‘wind up’ in a spiral; it is as if the thermostat is missing. In these situations the behavior can become extremely challenging and aggressive, and it can be difficult for the children to calm down by themselves.

Following encephalitis, an injury to the brain can affect both your child’s ability to control their behavior and their awareness of what is acceptable or appropriate in the moment. However, speaking to you, in a quiet situation, they may be able to tell you exactly how they should behave, but be incapable of putting that into practice in ‘real life’ circumstances. After an episode of inappropriate behavior, they may be upset about what they have done, but they still have difficulty not displaying this behavior again. This can feel very frustrating for parents.

Referral to a psychologist

The best basis for helping your child is a loving and caring relationship which is not always easy in the face of very difficult behavior. Try to see your child as separate from the difficult behavior: ‘I love you, but I don’t like what you’re doing’. This can help you to work together on the problem behavior, without your child feeling bad, or unloved.

To help change a child’s behavior it is essential to have an assessment of the difficulties that may lie behind it. Is there a lack of insight, is there disinhibition or poor emotional control, is there a memory problem or a problem with visual or auditory perception (your child’s interpretation of what is seen or heard)? For an assessment of your child’s difficulties and help with strategies to change them, ask their doctor to refer them to a child psychologist for a neuropsychological assessment and/or advice.

Antecedent behavior management

Most children can learn to behave in an acceptable way because it results in a rewarding consequence. Children affected by encephalitis may have lost the cognitive skills needed to respond in this way. They may not be able to:

• Understand cause and effect.
• Always remember what they have to do to avoid punishment or to earn rewards.
• Understand that good behavior may be rewarded at a later time and be patient.
• Remember the rules and be able to use them in different situations.
• Control their behavior at will in different situations.

Antecedent behavior management is a much more appropriate strategy for children affected by encephalitis. It is a positive, proactive approach, based on the idea of preventing inappropriate behavior as opposed to dealing with behavior problems after they have happened. The antecedent is what happens before the behavior occurs or what has provoked it. Antecedents can be things that happen, such as a change in activity, a loud noise or a distraction. They could also be actions such as asking your child to complete a task, giving attention to another child or saying something that they don’t like.

Strategies for parents/carers

a) Keep a diary

You should seek help from a suitably qualified and experienced psychologist to address significant behavioral problems and to learn ways to manage the behavior differently, but it is possible to make some changes yourselves. Problem behavior can be overwhelming and it can feel as though like all behavior is a problem, so it can be helpful to keep a diary or draw up a chart and record behavior for one or two weeks. This will give you information about the patterns of behavior across the day and week and may help you to identify times of day (e.g. before school, at bedtime or at the dinner table), or particular triggers (being told ‘no’, arguments with a sibling, your child being tired) to behavioral outbursts.

Suggested information prompts for a behavioral diary include:

• Date
• Time
• Description of previous night’s sleep
• Fatigue levels before the outburst (0 = no fatigue; 10 = very fatigued)
• Where were you?
• What was happening beforehand?
• Description of what happened
• Intensity of behavior (0 = lowest; 10 = highest)
• How long did it last for?
• What did you do next?
• What happened afterwards?

b) An example of antecedent management of the problem behavior

Your child swears and kicks whilst getting ready for school in the morning. It is a busy time and everyone else is getting ready for school or work. You just want your child to get dressed and have their breakfast but when you tell them to do this the tantrum starts. You tell them that they must be ready by a certain time or they cannot watch their favorite TV programme that evening. Your child takes no notice and does not do what you tell them. You and the rest of the family become exasperated. Then your child has another tantrum when they do not get to watch the TV programme later.

One possible cause of the behavior above is that children affected by encephalitis are less flexible in their thinking; they may find doing more than one thing at a time impossible; they may not be able to focus and concentrate when the environment is busy. A solution based on antecedent management is to manage the situation by putting something in place before the behavior occurs. In this example, it could include ensuring you have a structured morning routine. It is important to break down and list the morning activities, making sure all the activities in a routine are listed. It might be helpful to create a visual timetable with pictures and words attached to each activity. You might want to invite your child to take part in creating the visual routine. This might include finding pictures off the internet connected with the activity, or taking pictures of your child undertaking each activity.

It can also be helpful to list each activity in a routine in the order they are done. For example, against ‘eat breakfast’ break down the sequence into:

• take bowl from cupboard.
• take cornflakes from shelf.
• pour cornflakes into bowl.
• put packet back on shelf.
• take milk from the fridge.
• pour onto cornflakes etc.

This is initially very time consuming for you as a parent but soon your child will learn to use the checklist and their morning activities will flow. You may also decide that you need to sequence some activities within a routine and not others. Putting antecedent behavior strategies in place is not easy for a family. Discuss the possibility of accessing training with your child’s doctor or any other doctor.

c) Tips for parents/carers

Be goal-focused and proactive. Choose which behavior to focus on and make a plan ahead of time about how to manage the targeted behaviors. You might want to use some of the tips below when you make your management plan.

• Whatever strategies you plan to use, be consistent and apply routinely.
• You may need to change your behavior for your child to change theirs. It can be helpful to use the behavioral diary to reflect on your responses and emotions.
• Keep calm, do not over-react or shout, stay in control of your own feelings, expressing anger or irritability will only make your child more anxious.
• Maintain eye contact at their level and a low tone of voice. Do not ask your child to explain the reasons for his / her inappropriate behavior, especially at the time of a behavioral outburst as children affected by encephalitis often have limited self-awareness and have difficulty analyzing their own behavior.
• It can be helpful to use a ‘loud speaker’ approach with a child by speaking out thoughts to support orientation, de-escalation, to explain helpful strategies and to forewarn about transition. For example, ‘you have 5 more minutes on PS4 before we have lunch’.
• Children with behavioral problems following encephalitis can reach a ‘point of no return’. Recognize and respond to initial signs of agitation or inappropriate behavior and make a de-escalation plan ahead of time about how to respond in those situations. A de-escalation plan may include distraction, redirection, labeling emotion, cueing them away from an environment that is upsetting them, cueing them into a low stimulation environment to promote calmness.
• Avoid non-specific comments such as ‘behave yourself’ or ‘try being good for a change’ which give no clues to how your child should behave. Instead, say exactly what you want them to do.
• Keep activities structured and organized.
• Use calendars, visual timetables and clocks to explain what is going to happen before it happens.
• Avoid the word ‘no’. Instead use redirection and provide a positive alternative. For example, rather than ‘stop climbing on the climbing frame’, say ‘climb down from the climbing frame and let’s play on the swing / go and have lunch’. Also using structured choice to scaffold decision making in advance can prevent you from having to say ‘no’, which often causes distress and non-compliance. For example, ‘do you want ham or cheese in your sandwich?’; ‘do you want to go to the park or play a game at home?’
• It may help to get your child to do something physical to work off emotional tension. Take them for a walk round the block. However, be wary of vigorous exercise if they are ‘wound up’ already. A quiet time with music may then be better.
• If your child is getting anxious or agitated, try giving them something to occupy their fingers (plasticine or a squishy ball) or a sweet to suck or a drink with a straw.
• Make sure your child gets plenty of rest. Pace and plan activities accordingly across the day and week; behavioral problems often become more frequent and intensive when a child is tired.
• Use planned ignoring (have a blank non-smiling face, avoid eye contact and turn away/walk away) for negative attention seeking behavior with quick diversion to a positive activity. As soon as your child stops the behavior smile and make eye contact, give a hug.
• Focus on strengths, on what your child is able to do.
• Use sincere, meaningful words and actions to show how pleased you are with good behavior. Tangible rewards (chocolate or other food stuffs) do not help teach the value of social reward.
• Use descriptive praise for positive behavior, i.e. label clearly your child’s positive behavioral response. It is hugely reinforcing when behavior that is positive is noticed and praised.
• Give your child a place of refuge, somewhere calm and safe, where they can go when they feel overwhelmed.
• Everyone needs to be in charge of something in their lives. A child with cognitive problems has little control, so behaving badly is one way of gaining some control. Make sure that your child is allowed some control over something appropriate.
• Show your child, by your actions, how to handle difficulties and get along with others.
• Behave in and model the ways you want your child to behave—for example, be caring, show understanding and be respectful of others.
• If your child is older you may want to include them in the discussion and plans about managing difficult behaviors.
• Be kind to yourself, plan in fun stuff and talk to other people – find out what has been helpful for them.
• Communicate with school regarding the behavior at school/home.

1. Repellents: Protection against Mosquitoes, Ticks and Other Arthropods. https://www.epa.gov/insect-repellents[↩]