What are the behavioural, emotional and cognitive impacts of meningitis and septicaemia on children?
Professor Elena Garralda and Dr Lorraine Als answer a series of questions:
My 6 year old son was very ill with meningococcal septicaemia but after 5 days in PICU and 3 more weeks in hospital, the doctors say he has made a full recovery. However, he still gets tired very quickly, and seems to have regressed – he is clingy one minute and has extreme temper tantrums the next. Since coming home from hospital 3 weeks ago he has been having night terrors and sometimes wets the bed. None of these things happened before he was ill. I’ve kept him off school until now, but I don’t want him to fall behind.
Q1. Is it better for him to get back into school and routine activities, or does he need more time at home recovering?
It is not unusual for children to display changes in behaviour after a serious illness. Although your child has made a full medical recovery, it sounds like he is experiencing these behavioural after effects. Going back into school and routine activities can be very helpful, provided of course that your child is ready to meet the demands of school. If you think he is not fully ready to return to school full-time, then we would suggest speaking to his class-teacher and/or head teacher about him attending on a part-time basis initially. Some of the families we have met have taken this approach and found it helps their child make the transition back to school without putting too many demands on them.
Q2. With the temper tantrums, sleep disturbance and babyish behaviour, he seems a totally different child. Will these problems resolve on their own? If so, how long does it normally take? What can I do to make things better?
Yes, these behaviours should be temporary, but can last for a number of weeks or months; they are commonly still apparent three months following hospital admission and normally improve over the year following admission.
The tantrums could be related to tiredness and sleep difficulties, but they could also be linked to concerns he may have about the admission. It is worth making it clear to him that tiredness and sleep difficulties are common following his illness, but also that they will slowly get better over time, and that you will be looking to see what teachers can do to help him through this period so that he does not get stressed about school work.
Some children have distressing vivid memories of the hospital admission, which again tend to improve over the weeks following discharge. Some parents - often mothers more than fathers - find it very difficult to discuss the admission with their children because they themselves are often very emotionally upset about the admission. In this instance, we would advise that you still seek to find an opportune time when your child can tell you whether he is troubled by memories of the admission and you can then try to put his mind at rest about unnecessary concerns.
If as a parent you find that you are giving in to your child much more than before the illness, our advice would be to explain in a kind and supportive, but also firm way, that unacceptable behaviour such as tantrums is no more acceptable than it was before the illness; however, if tiredness is at the root of his irritability, you will also look into ways to help him rest.
Q3. If things don’t improve, what can I do to get help?
There are two different ways of obtaining help. The most common is to simply explain the problem to you general practitioner (GP) and ask for a referral to your local child and adolescent mental health service (CAMHS). CAMHS are multi-disciplinary: the first person you see might be a psychiatrist, or a psychiatric nurse, a psychologist or a therapist, depending on the type of problem your child has and staff availability. Staff in CAMHS teams normally work in a collaborative way and if the first person seeing you (or you yourself) thinks that a different professional should see your child, they will discuss this with you and will be able to arrange a transfer of care. The second route may be better if the behavioural problems are closely linked to physical problems such as those following meningococcal septicaemia. The referral is then best to a paediatrician or paediatric neurologist at your local hospital, who may be able to give you advice and guidance on both the physical and behavioural difficulties
Alternatively, some paediatricians work in close collaboration with CAMHS paediatric liaison teams, and might be able to offer a joint clinic with their CAMHS colleague to discuss how to tackle both problems alongside each other.
In Ireland if you go to your GP they may refer you on to the mental health team in your Local Health Office. The mental health team normally includes a consultant psychiatrist, registrar in psychiatry and nurses. In many areas, the services of an addiction counselor, psychologist, social worker and occupational therapist are available. If you wish to go back to the consultant you attended at the hospital, you need to contact their secretary directly to set up an appointment.
2. For a child with persistent behavioural problems after meningitis, how would the family access help? What is the normal route for getting help, and what sorts of professionals (a psychiatrist? a psychologist? paediatrician? health visitor?) would the child normally see?
As answer 1.3 above
3. How do behavioural problems arise as a result of meningitis or septicaemia? Is there a physical basis for these problems? Is it ‘just psychological’?
It is still unclear what exactly causes the behavioural problems that follow meningitis and septicaemia. It is most likely to be a combination of physical and psychological factors.
Depending on the severity and type of illness, a child may suffer minor injury to the brain. This is thought more likely to occur following meningitis or encephalitis, as there is closer or direct involvement of the brain, but it can also occur after septicaemia. Much of this will have been discussed with you by the doctors during the hospital admission. Research tends to show that this damage to the brain is likely to resolve over time, but it may account for some behavioural change in the child in the short-term, for example sleep problems, tiredness/irritability and restlessness/over activity.
The mere experience of being severely ill is likely to be stressful for a child. Indeed, there is research that shows that children with meningitis and septicaemia admitted to paediatric intensive care experience what is called “post traumatic stress” symptoms in the months following their discharge. These symptoms are either based on intrusive thoughts (e.g., memories, real or dream-like, of their admission unavoidably popping into their mind) or avoidance behaviour of anything reminding them of the stress (e.g., not wanting to attend hospital appointments or talk about when they were ill) or both. The symptoms should reduce in time, but in a small number of cases, they may persist and require treatment. The distress caused by these memories, be it short or long term, can contribute to the clinginess, temper tantrums, sleep disturbances, and regression to baby-like behaviour. This can be especially marked in younger children as they will find it harder to express themselves and their distress in any other way.
Another problem is that parents may find it hard to be strict and discipline their children as usual following the illness - often because they themselves can suffer from stress disorders following the admission - which may also make the child anxious and decrease their ability to control their bad moods.
4. When young children have temper tantrums after meningitis and cry and scream, could this be due to pain? Older children and adults sometimes report chronic headaches after meningitis. Could the crying and tantrums be due to headache?
Yes, this could certainly be due to pain. As mentioned above, younger children may find it difficult to express themselves, and therefore may respond to pain through tantrums or crying or other symptoms which may be non-specific. However, the tantrums may also be in response to the stress or anxiety they feel having experienced such a serious illness. The best approach would be to look for ways of helping the child communicate when they are having a headache. If you are unsure, your doctor may help work out whether headaches are present. It would be unusual for any headache to be due to a serious condition, but if it is clear your child has headaches and that these persist, then further medical help should be sought.
5. Can ADHD be an after effect of meningitis? (Amongst MRF members, many children who did not seem to have any behavioural problems before the illness have been diagnosed and treated for ADHD after meningitis. Parents often feel stigmatised, and that teachers/doctors believe bad parenting is to blame.)
ADHD is a developmental disorder, which normally becomes apparent early in childhood and especially when children start school and find it difficult to settle down, concentrate and learn. After meningitis or other critical illnesses, a number of children become restless and overactive, as seen in children with ADHD. However, our own research into children with meningococcal disease – which often involves some degree of meningitis – found this effect to be most noticeable three months after discharge from hospital, but to reduce considerably at one year follow-up. The most likely cause would appear to be some degree of brain excitation following the illness but unlike ADHD, it should improve over the following year. Some studies that have followed up children taken ill as infants more long-term have reported links between meningitis and probable diagnosis of ADHD. This was seen in a small handful of patients, and in some of these cases one cannot be certain that the child wasn’t already vulnerable to developing ADHD irrespective of contracting meningitis. The key thing is, regardless of whether the child has behavioural symptoms similar to ADHD, or ADHD itself, that parents should not be made to feel they are causing this behaviour. They may find it helpful in some cases to talk to somebody for advice about to handle it and a referral to CAMHS may also be useful.
For Ireland you could contact Irish National Council of AD/HD Support Groups (INCADDS) http://www.incadds.ie/about-us.html
6. My daughter had bacterial meningitis at 18 months of age. She was seriously ill at the time and spent over 3 weeks in hospital. However, she seemed to recover completely. She had a hearing test and everything was fine, and she was medically discharged after just one follow up appointment a month or two after we brought her home from hospital. She seems a perfectly normal little girl, but now, half way through her first year at school, she seems to be struggling with school work (both reading and arithmetic). Her memory seems to have been affected and I wonder if this might be part of her learning problem. She also finds it hard to concentrate, and is starting to get in trouble with her teachers because of this. Her two older siblings are both doing very well at school.
Q1. Could her learning and concentration problems be due to her meningitis?
Yes. There is well documented evidence to suggest that some children experience learning and concentration problems following meningitis.
Q2. How can I get extra help for her at school?
If you feel your child may need extra help, but this hasn’t been identified by the school, you should talk to your child’s class teacher, the special educational needs co-ordinator (SENCO) at the school, or the head teacher.
Details of SEN code for parents can be found at the following site: http://www.teachernet.gov.uk/_doc/3755/4163_A5_SEN_GUIDE_WEB%5B4%5D.pdf
In Ireland you would contact The National Council for Special Education (NCSE). This is a statutory body established under the Education for Persons with Special Educational Needs Act 2004. Since its establishment, they have concentrated on developing an organisation which provides a timely and efficient service to schools in sanctioning teaching and Special Needs Assistant (SNA) resources to support children with special educational needs. This is likely to be severely cut during the next year due to the economic climate. Another option is to contact the National Disability Authority at www.nda.ie
Q3. Is the sort of help she needs any different because of the meningitis than it would be if she was born like this?
Not really: the help required will depend on the educational problems shown.
Q4. Can I expect that educational support will bring her up to the same educational standard as her brother and sister?
As hard as it may be, try not to compare her to her brother and sister as children may easily misinterpret comparisons and get the impression that they are less valued in a general way. Every child is different. Educational support will undoubtedly help your daughter, but one cannot be sure or expect that she will reach the same standard as her brother and sister.
Q5. What can we do to help her as a family? Are there particular exercises or games or nutritional supplements that might help?
Continue to be supportive and patient – but also firm when required – and try to get her the extra support she needs at school. The evidence regarding the use of mind training aids and nutritional supplements is mixed and it is not recommended that you put a high level of energy or hope into this.
7. My child is getting extra educational support at school, although he hasn’t had a statement of special educational needs. He recovered from meningitis last year. Will the educational support team will liaise with staff at the hospital who he sees for follow up appointments?
Not usually, unless there are any specific symptoms the teacher is concerned about and wishes to have clarified by the paediatrician. However if the extra support is going to be reduced prematurely in your view, teachers might call on paediatricians for clarification of the medical problem and advice about educational help.
8. My son had pneumococcal meningitis at 8 months of age. He was severely ill in hospital for about a month and has had hearing tests and several follow up appointments with the paediatrician. His hearing seems to be fine, but the doctors tell us that there may have been some damage to the brain, but it is not possible to predict the impact this will have and we have to wait and see. Now at 18 months of age he seems to be meeting his developmental milestones. However I am very worried about after effects...what should I look out for and for how long? If he keeps on developing normally, when can I assume he has the ‘all clear’? What can we do in the meantime? I know I should be happy that no major problems have turned up, but it is impossible not to be anxious and I can’t seem to simply enjoy watching him grow.
It is completely understandable for you to be anxious following your child’s illness, even with the good news that he is currently meeting his developmental milestones. As your son was very young when he contracted meningitis it is very difficult to know whether his development has been affected, but if it has, more likely than not he is going to be mildly affected rather than in any major way. The most telling time will be when he starts school. Wait and see how he settles in and copes with the demands placed on him. It is best not to expect any problems, but rather assume that he has recovered without any effects on his learning. This should help your child develop his self-confidence un-inhibited by negative expectations. If some difficulties are identified by you or the teachers, it is entirely possible that these turn out to be minor and easily remediable.
9. Does the anxiety and emotional stress of the child’s illness/ hospitalisation affect the parents in such a way that it can affect the child’s behaviour? What can families do to minimise this?
Yes it can. The stress for parents can be very high and children are very sensitive to their parents’ moods. It helps - if you find this possible - to talk about the hospital experience with your child or others close to you, and/or to think about what you might find helpful in reducing fear and coming to terms with the experience. If the stress reaction in the parent is very high and impairs his/her ability to get on with everyday life and with their usual way of parenting their child, parents may be advised to seek help for themselves. As already mentioned, giving in to the child can be unhelpful and rather than this, caring, supportive firmness would be recommended.
10. My son had bacterial meningitis aged 2 and seemed to make a good recovery. He got all through primary school and everything seemed OK although we always suspected that the meningitis had some affect on his ability—he has never done as well as his brother and sister. Now he is a teenager and his behaviour has become simply impossible. He’s constantly in trouble at school and unbearable at home. I have heard that meningitis can affect a child’s behaviour. Could these behavioural problems be due to the meningitis even though that was 12 years ago? What should I do?
It is unlikely that having meningitis so long ago would have direct links to new behavioural problems such as you describe. However, the meningitis might have rendered your child more vulnerable to developing educational and behavioural problems, but for these to reach the level you describe one would expect that additional stresses are playing a more important part; perhaps difficulties in his relationship to his peers as well as to his brother and sister; he may be struggling increasingly to keep up with school work and find this embarrassing and demeaning; he may be striving to become independent and not know how to go about this. We would advise that you get in touch with your GP and consider the possibility of a referral to your local CAMHS which should be able to help.
In Ireland contact your GP and get them to refer you to the Mental Health Team in your Local Health Office.
Professor Elena Garralda
is Professor of Child and Adolescent Psychiatry at Imperial College London and Honorary Consultant Child Psychiatrist with the Central and North West London Foundation Trust.
Professor Garralda originally trained as a doctor in Navarra, Spain and then moved to the UK where she trained in psychiatry and child and adolescent psychiatry at the Maudsley and Bethlem Hospitals in London.
Since then she has become a Fellow of both the Royal College of Psychiatrists and the Royal College of Paediatrics and Child Health. Her research and clinical interests are focused on the interface between physical and mental health in children and aims to help improve health services for children and adolescents.
Dr Lorraine Als, has worked as a Research Psychologist at Imperial College London since 2007. Her research interests include illness-related neuropsychological and psychiatric changes.