Your Guide to Encephalitis: Symptoms and Causes

Encephalitis is a serious but relatively uncommon condition whose primary symptom is the swelling or inflammation of the brain.

Find out below what encephalitis is and how doctors diagnose and treat it. The good news is that many people do recover, especially when you catch the condition early.

What are the symptoms of encephalitis?

Encephalitis is a medical condition that causes the brain to swell or inflame. If you suspect that you or a loved one may have encephalitis, you should seek immediate medical attention by calling 999.

The illness often first appears as flu-like symptoms. Over the coming hours and days, those afflicted with encephalitis often begin to experience severe neurological symptoms. Encephalitis is often more severe for children, older adults, and immunocompromised individuals.

Early signs of encephalitis

Early signs of encephalitis may include:

• Fever (high temperature)
• Headaches
• Muscle and joint pain
• Fatigue
• Weakness

Severe or long-term symptoms

More severe encephalitis symptoms include:

• Seizures (fits)
• Stiff neck
• Loss of consciousness
• Difficulty speaking and hearing
• Changes in behaviour and personality
• Loss of movement and/or weakness in the face and the body
• Altered or lost consciousness

In very young children, encephalitis symptoms may also include irritability, feeding difficulties (not feeding or waking up for feeds), and bulging of the soft spots (fontanel) in their skull. 

There is a risk that the condition may also lead to cerebral palsy in infants because of damage to the developing motor control areas of the brain.

What causes encephalitis?

What causes encephalitis are viral infections and immune-related reactions. How you get encephalitis varies depending on the type.

The most common cause of infectious encephalitis is the herpes simplex virus (HSV).  Other infections that can lead to the condition  include tuberculosis, listeria, legionella, and fungal/parasitic infections. 

With autoimmune encephalitis, your immune system attacks the brain. This can happen spontaneously or in the weeks following an infection.

It’s important to know that encephalitis is not always preventable. Even after treatment, the cause remains unknown in half of all cases.

How is encephalitis transmitted?

Encephalitis is not contagious, meaning you can’t catch it from another person.

However, you can catch the infections that lead to encephalitis, such as HSV through close contact, coughing and sneezing.

How serious is encephalitis?

Encephalitis is not a common illness as it only affects five to eight people per 100,000 in England. It is, however, a very serious condition. 

The mortality rate is 19% in treated patients and 70% in untreated. The condition also leads to a heightened risk of life-long brain injuries that can result in amnesia, epilepsy, and, in children, learning difficulties.

The more the person with encephalitis does not get treatment, especially after the first 48 hours of the illness, the worse the outcome.

 Can encephalitis cause long-term conditions?

Some studies have reported that untreated encephalitis may lead to longer-term complications like dementia. 

The best way to avoid these outcomes is to see a medical professional as soon as you can. Results show early treatment improves survival and reduces long-term effects, so please don’t delay in seeking urgent care.

What are the different types of encephalitis?

The different types of encephalitis are:

• Viral encephalitis: The most common form, the causes include viruses like herpes simplex virus (HSV), fungal and parasitic infections.
• Autoimmune encephalitis: The immune system of your body identifies your brain as a threat and attacks it.
• Post-infectious encephalitis: Also known as acute disseminated encephalomyelitis (ADEM), you can acquire it weeks after your body fought off a viral infection.

How is encephalitis diagnosed?

Medical professionals diagnose encephalitis using a combination of different tests to verify inflammation in the brain, including:

• Lumbar puncture tests
• Neuroimaging
• Electroencephalograms (EEG)

It’s not always clear that a patient has encephalitis. It can appear, early on, like other conditions, such as a stroke or meningitis.

This can lead to a risk of delayed or missed diagnosis which may worsen the patient’s outcome.

What is the treatment of encephalitis?

Encephalitis is a medical emergency that requires urgent hospital admission. When doctors treat encephalitis, they use a number of targeted approaches, including:

• Antiviral medicines: Medical staff administer drugs like intravenous aciclovir.
• Immune therapies: Therapies like corticosteroids are used to try to stop the immune system from attacking your brain.
• Antibiotics: This is given while medical staff wait for the results on tests for conditions like potential bacterial meningitis or rare bacterial forms of encephalitis.

Many patients, during their recovery, stay in hospital, receiving treatments like breathing support, pain relief, and seizure and fluid management to manage their systems and prevent complications.

Recovery from encephalitis can be long-term and require rehabilitation. You may need help from a number of professionals, including neuropsychologists, occupational therapists, physiotherapists, and language therapists.

What support is available for carers and families?

Caring for someone with encephalitis can be physically and emotionally taxing, but there is help available.

This includes:

• Emotional support: A person may look the same but behave differently because of the impact of the illness. Living with someone with a brain injury can be really challenging, especially if they don’t act like you remember them.
• Practical support: Sometimes, a person recovering may need help with daily needs ranging from personal care to managing challenging behaviours.
• Financial support: Time off work and the financial pressures of paying for medical care or home adaptations can take their toll.

Encephalitis support in the UK is available from the NHS. Before a patient leaves, medical staff will assess their condition and build an individual care plan in consultation with the family.

Encephalitis International is the main support group in the UK. Check out how they can help you and consider meeting others in the same situation as you as encephalitis support groups to share your experiences and for emotional support.

When might a legal claim be considered?

Coming to terms with the life-changing impact of encephalitis is an enormous challenge for both patients and their families. 

Many cases of encephalitis result in complications due to the severity of the condition. However, in some cases, failures in medical care lead to complications that could have been prevented.

The following mistakes may be grounds for an encephalitis negligence claim:

• Delayed diagnosis: This can lead to a longer recovery time or a lifelong condition like cognitive impairment or paralysis.
• Incorrect treatment: The wrong treatment, or a delay in giving the right one, are frequent reasons for bringing missed encephalitis cerebral palsy claims..
• Lack of follow-up: If a patient was sent home but still had symptoms, and no proper checks were made after they left, this could be a duty of care.

If you believe that you or a family member were harmed due to delays or errors, speak to one of our experienced solicitors about making an encephalitis compensation claim.

How Fletchers can support you

For over 30 years, Fletchers Solicitors has helped many families claim compensation for medical negligence.

We understand that launching a claim may feel like it would just add to the pressures you’re dealing with right now. That’s why we take a sensitive, caring, person-first approach.

Tell us what happened to you and we’ll let you know what your options are. Whatever decision you make, we’ll guide you each step of the way on what to expect.

Our caring legal staff will never put you under any pressure. The relationships we enjoy with our clients often start from one conversation on whether they have a case.

That’s what we’re here for. Get in touch with our encephalitis claims solicitors with us by phone or through our website.