After meningitis or meningococcal disease, children and adults can have a variety of after effects. Some of these may be temporary, and others permanent. After effects can include deafness, mood swings, tiredness, learning difficulties, clumsiness, and complications such as brain damage, eyesight problems and epilepsy. Some problems may improve over time, and specialist rehabilitation services can also be helpful.
Taking time to recover
Just because meningitis and meningococcal septicaemia patients are well enough to leave hospital, it doesn't mean they are always ready to return to normal life. Meningitis and septicaemia can be followed by a variety of after effects. Some of these effects are permanent and can cause physical disabilities and some are less obvious, affecting the individual emotionally.
Although many people will make a fast and complete recovery, others will need a lot of support and care over the weeks and months following their illness. Unfortunately, it is impossible to predict which after effects, if any, a person may suffer. With a serious illness like meningitis, even when treatment is complete, people of any age can take some time to recover. This topic explains what to look out for and where to go for help with different problems.
A guide to what can happen
People who have had viral meningitis are just as likely to suffer after effects as those who have had bacterial meningitis and meningococcal septicaemia. The symptoms and possible long term complications of all forms of meningitis and septicaemia can be similar (although people will be affected in different ways).
With over 10 years' experience of helping individuals affected by meningitis and meningococcal septicaemia, the Meningitis Trust has been able to make a list of the after effects people may face. Some people may not have any of these complications and will make a fast and problem-free recovery. The after effects are listed with the most common at the top and so on (based on cases reported to the Trust over the last few years). Remember, treat this list only as a guide.
A child could get any of the after effects listed below after experiencing a serious illness.
- Babyish behaviour, being extra clingy
- Temper tantrums
- Forgetting skills they have recently learned
- Demanding attention
- Wetting the bed
- Waking up during the night, nightmares and sleep walking.
The younger the child, the harder it is for them to tell you how they feel. They may behave differently, be more clingy, have unexpected temper tantrums or demand attention in unexpected ways. Some children may seem to get one minor illness after another when they have had a major infection such as meningitis.
All this is quite common and will improve in time if you give the child plenty of patience and understanding. With very young children it is difficult to know how many of the after effects are caused directly by the illness, and how many are caused by them staying in hospital.
All children and adults
- General tiredness
- Finding it difficult to concentrate
- Short term memory loss
- Balance problems
- Violent temper tantrums
- Bouts of aggression
- Mood swings
- Learning difficulties and falling behind in some areas of school work. (It is important to talk to your child's teachers, or lecturers at college or university, if he or she is having any problems at school or college)
- Tinnitus (ringing in ears)
- Sore or stiff joints
- Eyesight problems
- Brain damage.
Deafness a common complication
One of the most common after effects is deafness. It affects around one in 10 people and can be temporary or permanent.
Anyone who has had meningitis should have a hearing test. This is especially important for young children because deafness is often more difficult to detect in them. Children's hearing tests can be arranged through your family doctor, ear nurse or hospital. It is important that you keep the appointment for this test.
Other possible complications
Other serious complications can include brain damage, epilepsy and changes in eyesight. Behavioural problems such as violent temper tantrums, aggression, mood swings and learning difficulties can also be long term problems.
During the illness, some people can develop septicaemia (blood poisoning), and in extreme cases, they may require skin grafts or even have limbs, fingers or toes amputated. The rash, which is a symptom of septicaemia, can leave scarring on the skin, but in most cases this may fade with time.
As the list shows, some of the most common after effects are emotional, not physical, but they can still affect the individual's quality of life dramatically. For example, if a person is left feeling tired, depressed and unable to concentrate, it may be weeks or even months before they can return to a normal routine.
The less stress the person has while he or she is recovering, the sooner he or she will improve. It is important that sufferers do not rush themselves and listen to what their body is telling them. Don't try too much too soon. "Complementary" medicines, such as acupuncture and aromatherapy have helped many sufferers deal with the after effects.
Can anyone get meningitis again?
Yes. But it is unusual for anyone to get the disease more than once. Sometimes it is possible for someone to suffer pneumococcal meningitis more than once, because of a tiny fracture or problem in the skull.
Socialising with sufferers
People who have been in close, prolonged contact (that is living or sleeping in the same household, or intimate kissing contacts, eg, boyfriend or girlfriend) with someone who has contracted meningococcal disease, will be offered a short course of antibiotics.
This should reduce the risk of the bacteria being passed on to the other people. The patient will also be given antibiotics as part of their treatment to make sure they can no longer pass on the bacteria.
If the patient has got meningococcal group A or C disease then the close contacts may also be offered a vaccine.
There is a low risk of all strains of meningitis being passed on by patients. However, once discharged from hospital, patients can safely return to work or school and mix with friends and relatives as soon as they feel well enough. If you find that people seem worried, it is probably because they do not understand about meningitis and how it can be caught.
There is life after meningitis
#1 "My son had pneumococcal meningitis when he was six months old. He has always been difficult but it wasn't until he started school that it was discovered he had behavioural and social difficulties, and was also hyperactive. He is now on medication and it has finally been confirmed that the meningitis caused his difficulties. He has been assessed for special needs and is trying out a new school, having been excluded from the first one. I am over the moon at the difference in our lives now!"
#2 "Having meningococcal meningitis 15 years ago at the age of 15 left me totally deafened. This completely changed my life and lives of my family and friends. The problems associated with being deaf are many: learning to lip-read, relying on others for telephone communication and limited employment prospects are among them. However, after may trials and tribulations I am now living as full a life as possible and have recently had a cochlear implant which has greatly improved my quality of life. There is hope after meningitis - even if left with a severe disability." (Not everyone who has lost their hearing is suitable for a cochlear implant.)
A specialist will normally see children and adults who have had bacterial meningitis or meningococcal septicaemia a few weeks after they leave hospital to check there are no complications. Sometimes hospitals may refer individuals for specialist rehabilitation centres or local physiotherapists for help.
If your after effects do not improve, or if you are worried about anything, ask your family doctor for help.
It is important to look after those affected by the disease in the weeks, months or even years following their illness.
The New Zealand Ministry of Health has an informative web page on Meningococcal disease in New Zealand.
Healthline for phone advice
The Ministry of Health runs a free (within New Zealand) helpline for people of all ages with health concerns - 0800 611 116 - it is available 24 hours a day and calls are answered by a registered nurse or other health professional.
The Meningitis Trust (UK)
The Trust is a registered charity founded in the UK in 1986 by people who had a direct experience of meningitis. It leads the fight against meningitis by:
- offering a wide range of emotional and practical support for people affected by meningitis/meningococcal septicaemia.
- producing tailored education packages for childcarers and healthcare professionals.
- producing an extensive range of information to raise awareness of the disease.
- funding research into vaccines and treatment.
Also see the Meningitis Trust website www.meningitis-trust.org
Original material provided by the Meningitis Trust (UK). Reviewed by everybody. Updated April 2009.