Recovering from childhood bacterial meningitis and septicaemia

Your guide, My Journal

Introduction

Estimated 3,400 cases per year Approximately 2,100 in children 25% of children who survive will be left

with serious long-term after effects Babies under 1 month of age (neonates)

are more likely to be left with long-term problems than older children

2003 MRF member survey

Only 23% had a hearing test within one month of being well enough

25% of responders had no hearing test at all 67% experienced short term after effects

27% behavioural, emotional and psychological problems

16% fatigue 9% headaches

2/3 who required support for psychological problems had difficulty accessing it

Many with after effects who required therapy had difficulty accessing it

NICE Clinical Guideline 102

Considerations

Different types of outcome Children that make a good recovery Children who have temporary or short term

problems Children who recover with long-term after effects Children who go on to experience effects at a later

date Children whose after effects are uncertain

(neonates and babies) Diverse range and severity of after effects Impact on the wider family

The Resource

Jointly produced by MRF and MT Your guide

In depth information about recovery after childhood meningitis and septicaemia

My Journal A place for parents and children to keep a

personal record of the illness, recovery and follow-up care

Online information Houses downloadable fact sheets about specific

after effects and after care

Good recovery

Ease anxiety Educate about the after care all

children should receive Hearing test Review with paediatrician

Raise awareness of common short term problems

Raise awareness of possible later developing problems to look out for Learning and behavioural problems Growth plate damage (septicaemia

only)

Short term problems

Fatigue Headaches Change in behaviour

Temper tantrums, clinginess, bed-wetting, nightmares, mood swings, aggression, restlessness, inability to concentrate.

Research shows that this is common in the first year following illness. Shears et al. Pediatr Crit Care Med 2005 Vol. 6, No. 1

Loss of skills/co-ordination problems

The brain continues to develop into early adulthood

If a brain injury occurred because during the acute illness, some problems may not show up until the child is older

Executive functions: planning, problem solving etc are not often used until a child gets older

The transition from primary to secondary school can be a time when some of these problems start to become apparent

Problems with learning and behaviour

Problems with learning and behaviour

Viner et al. Lancet Neurol. 2012 Sep;11(9):774-83 3 – 4 years post MenB significantly poorer cognitive function

in terms of IQ, executive function, planning, and memory than controls

Sumpter et al. Brain Injury, 2011, 1–8, iFirst Children with meningitis aged 5 to 16

years admitted to RHSC from Jan 1991 to Jan 2007

8 years post illness 32% parents 19% teachers reported clinically significant behavioural difficulties using SDQ

Problems with learning and behaviour

Survivors of a national incidence study of BM in infancy (Arch Dis Child 1991;66:603–7) evaluated again at 13 and16 years of age Halket et al. Arch Dis Child 2003;88:395–398

Parents of children who had meningitis more than twice as likely to classify their child’s behaviour as “not normal” compared to controls

De Louvoius et al. Arch Dis Child 2007;92:959–962. ‘Healthy’’ survivors of bacterial meningitis in infancy pass

significantly fewer GCSE examinations than the controls and had proportionately less educational support.

Growth Plate Damage

Associated with Purpura fulminans as a result of septicaemia

Caused by damage to the growth plates during the acute illness

Growth arrest or bone growth deformity Your guide

Advises that limb length should be monitored in children who have scarring over their joints

Alerts parents to look for loss of wrist and forearm movement if there is scarring in this area

Recovery with after effects

Wide range of after effects Hearing loss and tinnitus and balance problems Hydrocephalus Sight loss Epilepsy Problems with movement and co-ordination Behavioural/emotional problems Learning, Memory and concentration problems Speech and language problems

After effects specific to septicaemia Skin and muscle damage Amputations Bone growth problems Organ damage (such as kidney failure)

Recovery with after effects

Online factsheets at http://www.meningitis.org/reco

very http://www.meningitis-trust.org

/recovery My Journal is a great place to

record: Information specific to your

child Information about ongoing

medication Keep track of your child’s

appointments Useful to share information in

the Journal with others involved in the care of the child

Neonates

50% have a disability at 5 years if age

Uncertainty at discharge over whether there will be long term after effects due to ABI as they have not reached developmental milestones

Neonates

Use development checklists www.nhs.uk/tools/pages/

birthtofive.aspx ‘My Journal’ helps record

progress both before and after the paediatric review

How to access further care Encourage sharing of

information in ‘My Journal’ with health/educational professionals if needed

Summary

Ease anxiety by providing detailed information to parents and children at hospital discharge

Raise awareness of the aftercare that all children should receive after discharge

Raise awareness of potential late onset after effects Educate parents about the after care available for

serious and long-term after effects of bacterial meningitis and septicaemia

Allows parents to keep a record of their child’s progress and easily share information about their child’s illness with relevant health and educational professional

NICE Quality Standard 19

Acknowledgements

Dr Janice Alistair Dr Lorriane Als, Research Psychologist Dr Helen Campbell, Senior Clinical Scientist, Public Health England Miss Naomi Davis, Consultant in Paediatric Orthopaedic Surgery Dr Liam Dorris, Consultant Paediatric Neuropsychologist Professor Elena Garralda, Child and Adolescent Psychiatry Dr Scott Hackett, Consultant Paediatrician Vicki Kirwin, Audiology Specialist Dr Rachel Kneen, consultant Paediatric Neurologist Professor Simon Kroll, Paediatrics and Molecular Diseases Sheila McQueen, Academic Head of Nursing Science Mr Fergal Monsell, Consultant Paediatric Orthopaedic Surgeon Dr Simon Nadel, Consultant in Paedaitric Intensive Care Dr Nelly Ninis, Consultant Paediatrician, Dr Ifeanyichukwu Okike, Clinical Research Fellow Dr Mary Ramsay, Head of Immunisation, Public Health England Dr Andrew Riordan, Consultant in Paediatric Infectious Diseases and Immunology Ms Fiona Smith Dr Alistair Thompson Dr Andrew Winrow, Consultant Paeditrician