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
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
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
Notes de l'éditeur
Issued in June 2010.In response to this we wanted to produce easy to read information for parents that doctors could hand over to parents at discharge. At the same time the Meningitis Trust were working on producing a journal for parents to record information about their child’s meningitis and septicaemia. Dr Alistair Thompson, vice president of education at Royal College of Paediatrics and Child Health has worked for both charities for many years and paved the way for us combine both resources into one.