This document provides information and guidance for parents on recovering from childhood bacterial meningitis and septicaemia. It estimates that approximately 3,400 cases occur per year in the UK, with 25% of surviving children left with serious long-term effects. Common short-term effects include behavioral issues, fatigue, and headaches. Long-term effects can include hearing loss, learning disabilities, and growth problems. The resource aims to ease parent anxiety, provide information on expected recovery timelines and potential late-onset issues, and allow parents to track their child's progress through follow-up using an online journal. It emphasizes the importance of ongoing monitoring and therapy access for managing effects.

1. Recovering from childhood bacterial meningitis and
septicaemia
Your guide, My Journal

2. 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

3. 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

4. NICE Clinical Guideline 102

5. 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

6. 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

7. 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)

8. 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

9.  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

10. 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

11. 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.

12. 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

13. 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)

14. Recovery with after effects
 Online factsheets at
 http://www.meningitis.org/recover
y
 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

15. 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

16. Neonates
 Use development
checklists
 www.nhs.uk/tools/pages/bi
rthtofive.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

17. 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

18. NICE Quality Standard 19

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