Claire Wright, Medical Information Officer, Meningitis Research Foundation

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