Kawasaki Disease - Societi

Kawasaki Disease

Clinical Resource Pack

Kawasaki Disease Symptoms

Persistent fever

Rash

Bloodshot eyes

Cracked lips/‘strawberry’ tongue

Swollen fingers/toes

Swollen glands

If a child has a PERSISTENT FEVER

and two or more of these symptoms THINK KAWASAKI DISEASE!

Dear Doctor 5 Clinic Resources

Current NICE Guidance 7

Primary Care Poster 9

TEMPERS - A Kawasaki Disease Mnemonic 11

Myths and Facts 13

Long Term Issues leaflet 15

Waiting Room ResourceKawasaki Disease Awareness Poster 17

Thank You 16

4 Societi, the UK Foundation for Kawasaki Disease

Access the RCGP Kawasaki Disease e-learning course here

Kawasaki Disease is the leading cause of

acquired heart disease in UK children

https://elearning.rcgp.org.uk/course/info.php?id=363

The UK Foundation for Kawasaki Disease

Kawasaki Disease is the leading cause of acquired heart disease in children in the UK. It’s time we changed that....

...TOGETHER we will.

The UK Foundation for Kawasaki DiseaseVictoria Court, Holme Lane, Winthorpe, Newark, NG24 2NU

[email protected]

Societi Foundation is a registered charity in England and Wales (no. 1173755)

Persistent fever

Rash

Swollen fi ngers/toes

Bloodshot eyes

Swollen glands

Cracked lips / ‘strawberry’ tongue

Persisistet ntnt ffever

Rash

wollen fifingers/toe

Bloodshhot eyes

Swolllllellenn glglands

Clinical Resource Pack - Kawasaki Disease

Thank you for downloading a copy of our Kawasaki Disease Clinical Resource information pack.

Kawasaki Disease is increasingly common in the UK and today it is the leading cause of acquired heart disease in children in the UK. Our own research with over 200 NHS trusts shows that in the last ten years, hospital admissions for Kawasaki Disease in England alone increased fourfold. That’s not because of increased awareness unfortunately, because many parents and doctors still don’t know Kawasaki Disease - but it’s important that they do and I’d like your help with that.

A study done by the British Paediatric Surveillance Unit (BPSU) led by Professor Robert Tulloh, a leading UK expert in Kawasaki Disease (and one of our Trustees) showed that children treated early for Kawasaki Disease had a much lower risk of heart damage than those treated later. Evidence shows we should aim to diagnose Kawasaki Disease within 5 days from the onset of fever, or as soon as possible thereafter. Children diagnosed and treated after 7 days have a very high risk of lifelong heart disease. Raising awareness of this disease so we can achieve early diagnosis is simply critical. The BPSU study also showed that almost all children were seen in the fi rst 2 or 3 days by their GP, so there is a real opportunity to transform outcomes for children, by recognising Kawasaki Disease early. If you’d like to read the research paper, you’ll fi nd it on the homepage of our website www.societi.org.uk - thanks to the support of the BMJ. Scroll down to see ‘Latest Research for Clinicians’ and click on the link “Kawasaki Disease: a prospective population survey in the UK and Ireland 2013 - 15” published August 2018.

The enclosed information pack which I hope you will fi nd helpful, includes information posters which are suitable for display in clinic and waiting areas and a handy Myths and Facts sheet to share with your colleagues, current NICE guidance on Fever Under 5’s and Kawasaki Disease - and our information leafl ets which are endorsed by the Royal College of Paediatrics and Child Health. Finally, our pack includes a parent information leafl et on some of the longer term issues which children affected by Kawasaki Disease can experience.

If you have any questions please do get in touch. If you’d like any further copies of the information provided in the pack, printable copies can be downloaded from our website at www.societi.org.uk - or simply get in touch. We can provide our information free of charge. Finally, do look out for an RCGP e-learning course on Kawasaki Disease which will be released towards the end of 2019. We are delighted to be working with the college on this.

Thank you in advance for your help. Kawasaki Disease is increasingly common - we need doctors to EXPECT to see it and be READY to treat it. GP’s are the critical fi rst step in this and so I am very grateful for your support.

Yours sincerely,

Rachael McCormackFounder & Trustee, Societi Foundation

Enc. Societi Clinical Resource Pack


The current NICE guidance on Fever Under 5’s and Kawasaki Disease was updated and published in November 2019.

Current NICE guidance on Fever Under 5's and Kawasaki Disease

Updated NICE guidance published in November 2019 states:

Kawasaki disease

1.2.26 Be aware of the possibility of Kawasaki disease in children with fever that has lasted 5 days or longer. Additional features of Kawasaki disease may include:

• bilateral conjunctival injection without exudate

• erythema and cracking of lips; strawberry tongue; or erythema of oral and pharyngeal mucosa

• oedema and erythema in the hands and feet

• polymorphous rash

• cervical lymphadenopathy. [2019]

1.2.27 Ask parents or carers about the presence of these features since the onset of fever, because they may have resolved by the time of assessment. [2019]

1.2.28 Be aware that children under 1 year may present with fewer clinical features of Kawasaki disease in addition to fever, but may be at higher risk of coronary artery abnormalities than older children. [2019]

https://www.nice.org.uk/guidance/ng143/chapter/Recommendations

societi.org.uk


This Primary Care Poster has been designed as a clinic resource for Primary Care staff.

It can be printed at A4 or A3 size and may be laminated to be displayed in clinic.

T

E

M

P

E

R

S

Temperature - Persistent high fever

Erythema - reddened hands and feet with swelling

Mouth - dry, sore mouth, cracked lips, ‘strawberry tongue’

Pace - Treat early to reduce potential heart damage

Eyes - bloodshot, non-sticky conjunctivitis

Rash

Swollen glands in neck, often just one side

Remember TEMPERSChildren with Kawasaki Disease are

characteristically irritable!

Kawasaki Disease is the leading cause of acquired heart disease in UK children......faster diagnosis and treatment can change that!

Acute Kawasaki Disease

is always an emergency!

Case history is important in Kawasaki Disease - symptoms can appear over time. Not all symptoms appear in all children

Hospital admissions increased in England FOURFOLD in the last decade - EXPECT to see it, BE READY to treat it

Differential DiagnosisSymptoms

Persistent Fever

societi.org.uk ©Societi 2019

When ruling out the many other causes of fever in children...

...please THINK Kawasaki Disease.

Please...THINK Kawasaki Disease

Meningitis?

Strep Throat?

Scarlet Fever?

Measles?

Virus?

Slapped Cheek?

Tonsilitis?

DifferenWhfev

Pl T

THINK Kawasaki Disease.. . ...for our children

h

for our c

did heartdi se iiiin U

...ff

kkik

t in

can r tim

28% of treated children with heart damage

2016Outcomes

2020Outcomes?

Refer URGENTLY to paediatrician for treatment within 5 days from onset of fever

4% (or less) of treated children with heart damage

This is too high!

cade EXPE

2016

Heart Damage*

TreatmentTime*

Case History

Increasingly Common

Numbers to Remember*39% of treated infants develop coronary artery aneurysms19% of treated children overall develop coronary artery aneurysms#1 cause of acquired heart disease in UK children

*BPSU survey Kawasaki Disease, UK and Ireland 2013-2015

BPSU study findings show children treated early had a lower risk of lifetime heart damage than children treated later.

EARLY TREATMENT IS KEY to reduce risk of heart damage ...PLEASE DONT DELAY!

Societi is the UK Foundation for Kawasaki Disease. Registered charity no. 1173755

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us?ViruViruus?ru

ingitisMeniMeniingitis?nin

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Kawasaki Disease should always be considered in any

child with unexplained persistent fever

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Kawassssaaaakkkkiiii DDDDisease should always be

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Kawwwwaaaaasssssaakkkiiii DDDDDiiiiisssseas

If a child has a PERSISTENT FEVER & two or more of these symptomsTHINK KAWASAKI DISEASE!


Our RCPCH endorsed TEMPERS mnemonic leaflet can be laminated and displayed in a clinic room or can be

used as a waiting room resource for patients.

It is intended to be printed at A4.

Hard copy DL sized versions of this leaflet are available from Societi Foundation - please contact

us and we can provide you with these.

Kaw

asak

i Dis

ease

is p

redo

min

antl

y a

child

hood

illn

ess

thou

gh it

can

aff

ect

peop

le o

f an

y ag

e. It

s ca

use

is u

nkno

wn.

K

awas

aki D

isea

se is

the

lead

ing

caus

e of

acq

uire

d he

art

dise

ase

in c

hild

ren.

Aw

aren

ess

of K

awas

aki D

isea

se is

cur

rent

ly

low

and

it is

oft

en m

ista

ken

for

othe

r co

mm

on c

hild

hood

illn

esse

s, le

adin

g to

m

isdi

agno

sis

and

dela

yed

trea

tmen

t.

Chi

ldre

n w

ho g

o un

trea

ted

or w

ho a

re

trea

ted

late

r fa

ce h

ighe

r ris

ks o

f de

velo

ping

com

plic

atio

ns in

clud

ing

life

long

he

art

dam

age.

Earl

y di

agno

sis

and

trea

tmen

t ar

e ke

y to

bet

ter

outc

omes

...fo

r ou

r ch

ildre

n

The

UK

Foun

datio

n fo

r Ka

was

aki D

isea

se

Kaw

asak

i Dis

ease

- w

ho d

oes

it a

ffec

t?

It is

mos

tly a

chi

ldho

od il

lnes

s w

ith o

ver 7

5%

of t

hose

aff

ecte

d be

ing

unde

r 5 y

ears

old

but

it a

ffec

ts o

lder

chi

ldre

n to

o.

Kaw

asak

i Dis

ease

- w

hat'

s th

e is

sue?

In th

e U

K aw

aren

ess

of K

awas

aki D

isea

se is

low

. Cur

rent

ly U

K di

agno

sis

and

trea

tmen

t tim

es a

re to

o sl

ow. 3

9%

of b

abie

s (u

nder

one

yea

r) tr

eate

d fo

r Kaw

asak

i Dis

ease

dev

elop

ser

ious

he

art p

robl

ems.

28

% o

f dia

gnos

ed c

hild

ren

expe

rienc

e he

art

com

plic

atio

ns. O

vera

ll, 1

9%

of c

hild

ren

trea

ted

deve

lop

serio

us

hear

t dam

age.

For

a fe

w c

hild

ren

ever

y ye

ar K

awas

aki D

isea

se

is fa

tal .

..hel

p us

cha

nge

this

. W

e ne

ed e

very

one

to k

now

Ka

was

aki D

isea

se a

s ea

rly d

iagn

osis

and

trea

tmen

t can

pre

vent

he

art d

amag

e. (

Dat

a fr

om B

PSU

Stu

dy, K

awas

aki D

isea

se U

K &

Irel

and

20

13

-20

15

)

Kaw

asak

i Dis

ease

- h

ow c

omm

on is

it?

Hos

pita

l adm

issio

ns in

Eng

land

for K

awas

aki D

isea

se h

ave

incr

ease

d fo

urfo

ld in

the

last

ten

year

s. I

t's m

ore

com

mon

than

so

me

type

s of

men

ingi

tis.

Abou

t 1 in

10

,00

0 c

hild

ren

are

curr

ently

dia

gnos

ed e

ach

year

and

ver

y po

or le

vels

of

awar

enes

s m

ean

man

y m

ore

child

ren

may

be

affe

cted

.

Kaw

asak

i Dis

ease

- w

hat

can

I do?

Know

the

sym

ptom

s an

d re

mem

ber,

sym

ptom

s m

ay n

ot

appe

ar a

ll at

onc

e. N

ot a

ll ch

ildre

n pr

esen

t with

all

sym

ptom

s so

- if

a c

hild

has

a P

ERSI

STEN

T FE

VER

for 5

DAY

S or

mor

e w

ith 2

or m

ore

of th

e sy

mpt

oms

over

leaf

TH

INK

Kaw

asak

i D

isea

se a

nd s

eek

URG

ENT

med

ical

adv

ice.

You

cou

ld s

ave

a ch

ild's

hear

t.

Kaw

asak

i Dis

ease

is s

erio

us! A

war

enes

s is

urg

ent!

Toda

y, m

ost p

eopl

e ha

ven’

t hea

rd o

f Kaw

asak

i Dis

ease

. Tha

t’s

one

of th

e bi

gges

t cha

lleng

es w

e fa

ce. H

elp

us g

et it

kno

wn

beca

use

Kaw

asak

i Dis

ease

is in

crea

sing

ly c

omm

on in

the

UK.

To

o m

any

child

ren

and

youn

g pe

ople

toda

y ha

ve li

fetim

e he

art

dam

age

beca

use

of K

awas

aki D

isea

se ..

.hel

p us

cha

nge

this

. Fo

r mor

e in

form

atio

n vi

sit s

ocie

ti.or

g.uk

Kaw

asak

i Dis

ease

is

the

#1

cau

se o

f ac

quire

d he

art

dise

ase

in c

hild

ren

in t

he U

K...

...he

lp u

s ch

ange

thi

s.Te

mpe

ratu

re -

P

ersi

sten

t hi

gh f

ever

Eryt

hem

a -

redd

ened

han

ds

and

feet

with

sw

ellin

g

Mou

th -

dr

y, s

ore

mou

th,

crac

ked

lips,

‘s

traw

berr

y to

ngue

’

Pac

e -

Trea

t ea

rly

to

redu

ce p

oten

tial

hear

t da

mag

e

Eyes

-bl

oods

hot,

no

n-st

icky

co

njun

ctiv

itis

Ras

h

Swol

len

glan

ds

in n

eck,

oft

en ju

st

one

side

Kaw

asak

i Dis

ease

? Re

mem

ber

TEM

PER

SC

hild

ren

with

Kaw

asak

i Dis

ease

ar

e ch

arac

teris

tical

ly ir

ritab

le!

If a

chi

ld h

as a

P

ERSI

STEN

T FE

VER

an

d tw

o or

mor

e of

the

se

sym

ptom

s TH

INK

K

AW

ASA

KI

DIS

EASE

!

ww

w.ju

stgi

ving

.com

/soc

ieti

soci

eti.o

rg.u

k


Our Myths and Facts sheet has been developed following many ‘Kawasaki Conversations’ with doctors and families who have experienced a Kawasaki Disease diagnosis. It’s

clear that there is out dated information in circulation about Kawasaki Disease which we’re keen to help move on. We’ve

collected these ‘myths’ and, with our Scientific Advisory Board of UK leading Professors, presented the facts alongside.

It is intended to be printed at A4.

You can download your own set of Myths and Facts from our website

Thin

k yo

u kn

ow K

awas

aki D

isea

se?

H

ere

are

som

e co

mm

on c

linic

al m

yth

s an

d th

e fa

cts

behi

nd t

hem

!

Sym

ptom

s &

Tre

atm

ent

My

th: A

cha

ract

eris

tic

sym

ptom

of

Kaw

asak

i Dis

ease

es

sent

ial f

or d

iagn

osis

is p

eelin

g of

fing

ers/

sol

es o

f fe

etFa

ct:I

f sk

in p

eelin

g oc

curs

- a

nd it

onl

y ap

pear

s in

som

e pa

tient

s -

this

will

onl

y oc

cur

afte

r 1

0-2

1 d

ays.

Nev

er

dism

iss

a ca

se o

n th

e ba

sis

of s

kin

peel

ing

bein

g ab

sent

My

th: T

here

is a

tre

atm

ent

win

dow

for

IVIG

of

10

day

s Fa

ct: T

here

is n

o "w

indo

w"

or c

ut o

ff p

oint

for

IVIG

. If

clin

ical

ben

efits

are

pos

sibl

e an

d in

flam

mat

ion

is o

ngoi

ng

(fev

er, e

leva

ted

CRP

) -

TREA

T!A

nd d

o no

t de

lay

IVIG

ass

umin

g a

10

day

win

dow

for

effe

ctiv

e tr

eatm

ent.

Cur

rent

tre

atm

ent

tim

es a

re t

oo

slow

. Aim

to

trea

t at

5 d

ays

(ASA

P) a

fter

feve

r on

set

- ea

rly t

reat

men

t is

key

to

redu

ce r

isk

of h

eart

dam

age!

My

th: K

awas

aki D

isea

se h

as n

o ch

arac

teris

tic s

ympt

oms

Fact

: The

str

onge

st d

efini

ng s

ympt

om w

hich

sho

uld

alw

ays

trig

ger

susp

icio

n of

Kaw

asak

i Dis

ease

is a

pe

rsis

tent

, hig

h un

rem

ittin

g fe

ver

for

5 d

ays

My

th: I

VIG

redu

ces

hear

t da

mag

e fr

om 2

5%

to

5%

Fact

:19

% o

f al

l chi

ldre

n de

velo

p pe

rman

ent

dam

age

and

39

% in

fant

s de

velo

p co

rona

ry a

rter

y an

eury

sms

desp

ite IV

IG -

link

ed t

o de

laye

d tr

eatm

ent.

Ear

ly

trea

tmen

t is

crit

ical

!

Hea

rt D

amag

eM

yth

: Kaw

asak

i Dis

ease

rare

ly c

ause

s he

art

dam

age

Fact

:In

the

UK

, 28

% o

f af

fect

ed c

hild

ren

have

hea

rt

dam

age,

19

% h

ave

last

ing

coro

nary

art

ery

aneu

rysm

s.

39

% o

f in

fant

s de

velo

p co

rona

ry a

rter

y an

eury

sms.

Lat

e tr

eatm

ent

is li

nked

to

poor

er o

utco

mes

Who

& H

ow M

any?

My

th: C

hild

is t

oo y

oung

/ t

oo o

ld fo

r Ka

was

aki D

isea

seFa

ct:Y

ou w

ill s

ee K

awas

aki D

isea

se in

ver

y yo

ung

and

olde

r ch

ildre

n. It

can

be

mos

t se

vere

in in

fant

s (u

nder

1

yr)

and

c.2

5%

of

thos

e af

fect

ed a

re o

lder

tha

n 5

yea

rs.

My

th: K

awas

aki D

isea

se is

ver

y ra

re, y

ou’ll

nev

er s

ee it

Fact

: Kaw

asak

i Dis

ease

is in

crea

sing

ly c

omm

on. C

ases

ar

e do

ublin

g gl

obal

ly e

very

10

yea

rs. I

n En

glan

d, h

ospi

tal

adm

issi

ons

for

Kaw

asak

i Dis

ease

incr

ease

d fo

urfo

ld in

th

e la

st d

ecad

e. It

’s m

ore

com

mon

tha

n ba

cter

ial

men

ingi

tis a

nd m

easl

es. P

leas

e EX

PEC

T to

see

it a

nd b

e RE

AD

Y to

tre

at it

Dia

gnos

isM

yth

: Ech

ocar

diog

ram

s ar

e a

usef

ul w

ay to

con

firm

a

Kaw

asak

i Dis

ease

dia

gnos

isFa

ct: E

cho

is v

ery

usef

ul to

con

firm

hea

rt d

amag

e bu

t Ka

was

aki D

isea

se if

tre

ated

ear

ly, d

oes

not

alw

ays

lead

to

hear

t da

mag

e. E

cho

can

help

dia

gnos

e an

aty

pica

l cas

e.

Nev

er d

elay

tre

atm

ent

awai

ting

acce

ss t

o an

ech

o if

Kaw

asak

i Dis

ease

is s

uspe

cted

My

th: P

ersi

sten

t fe

ver p

lus

all 5

sym

ptom

s m

ust

all b

e pr

esen

t to

con

firm

a d

iagn

osis

of

Kaw

asak

i Dis

ease

Fact

: 47

% o

f U

K/I

rela

nd c

ases

are

inco

mpl

ete

i.e. d

o no

t ha

ve a

ll sy

mpt

oms.

Kaw

asak

i Dis

ease

can

be

diag

nose

d w

ith fe

wer

sym

ptom

s -

not

all p

atie

nts

exhi

bit

all s

ympt

oms

and

sym

ptom

s ca

n ap

pear

in

serie

s. If

a c

hild

pre

sent

s w

ith p

ersi

sten

t fe

ver a

nd 2

or

mor

e Ka

was

aki D

isea

se s

ympt

oms,

alw

ays

THIN

K Ka

was

aki D

isea

se

Impa

cts

My

th: T

he o

nly

last

ing

dam

age

from

Kaw

asak

i Dis

ease

is

to t

he h

eart

Fact

:Kaw

asak

i Dis

ease

is a

sys

tem

ic d

isea

se a

nd e

ffec

ts

can

be w

ide

rang

ing.

It c

an a

ffec

t hea

ring,

sig

ht, k

idne

ys,

join

ts a

nd c

ause

hyd

rops

of t

he g

allb

ladd

er. I

t can

als

o ca

use

beha

viou

ral i

ssue

s. S

ee S

ocie

ti Lo

ng T

erm

Eff

ects

leafl

et*

Long

-Ter

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Our longer term issues leaflet is intended to be handed to patient’s families to help them and other primary carers to

understand some of the issues associated with the effects of .

It is intended to be printed as a double sided folded A4.

Hard copy versions of this leaflet are available from Societi Foundation - please contact us

and we can provide you with these.

Eczema & skin peelingAfter Kawasaki Disease, some children have ongoing problems with occasional dry skin areas and skin peeling. Dry lips can be treated with Vaseline, this does help. Creams such as E45 can be used on dry, peeling skin if it is uncomfortable. Whatever cream you choose to use, pick one without antibiotics or perfumes as these ingredients can irritate the skin. Do discourage children from picking the affected areas too, as this could lead to infection.

ExerciseAll children can exercise after Kawasaki Disease, in fact regular exercise is important! Children may be advised by their doctor to avoid certain types of exercise if they have very serious heart damage. This would include those children taking blood thinning medicines like warfarin and clexane where a doctor may advise that they should not take part in contact sports, for instance. If there need to be any restrictions on exercise, your child’s doctor will advise you in detail. If you have any questions about exercise after Kawasaki Disease, discuss these with your doctor.

JointsNearly half of children affected by Kawasaki Disease have some initial issues with joint pain or swelling in the first few weeks. Areas most affected include large joints - elbows, knees or ankles. This can be quite painful but over the counter children’s painkillers can be given to help (ibuprofen should be avoided in children who are already taking aspirin.) Very occasionally joint pain can continue for longer – if this happens, discuss it with your doctor.

Tummy painMany children complain of tummy pain and possibly have vomiting and/or diarrhoea when first ill with Kawasaki Disease - this doesn’t usually last long. Ongoing tummy pain could however be linked to other issues, for instance it can sometimes be caused by some types of medicines (see also Treatments & precautions). Speak to your doctor if this is a concern.

BehaviourSome children will have difficulty concentrating, be more restless or have trouble sleeping for a short time after Kawasaki Disease. Some will experience anxiety linked often to awareness of a difficult period in hospital and older children may be alert to having been seriously unwell. This can lead to worries about health or a more generalised

anxiety. This shouldn’t present lasting difficulties for most children and studies show that this improves, with almost all children recovering within 1 to 2 years. If other mental health issues emerge, these are probably not linked to Kawasaki Disease and a doctor should be consulted.

TirednessHaving been seriously ill with Kawasaki Disease, many children experience tiredness and for some this can last a few weeks or months. After Kawasaki Disease, the recovery process will be different for each child and some may have low levels of energy for some time after being initially unwell. If tiredness is not improving and is affecting school (for instance) discuss it with your doctor.

Treatments & precautionsThe main approach to treating Kawasaki Disease initially is with two medicines called immunoglobulin and aspirin. After treatment with immunoglobulin, your child’s doctor will advise that for a period of 6 months, they will need to avoid having live vaccinations. This is simply because the antibodies in immunoglobulin may mean that vaccination might not be effective.

All children with Kawasaki Disease will also be treated initially with low dose aspirin for about 6 weeks. After 6 weeks an echocardiogram (ultrasound of the heart) will be done to check for any damage to the heart. Aspirin will be stopped in children with no lasting heart damage.

In children who develop lasting heart damage, low dose aspirin may be continued longer term. Some children may experience side effects whilst taking aspirin long term; these can include headaches, tummy pain and tiredness. Medicines to protect the tummy are often given with aspirin to limit side effects (see also Bruising).

Parents will be advised if a child is taking aspirin long term, following their initial illness with Kawasaki Disease, to stop this for a few days if there is a high fever (39°C+) This is to reduce the risk of Reyes syndrome, a rare but potentially very serious illness.

Other treatments Other medicines may also be given to those with the most serious heart damage, for instance children with giant coronary artery aneurysms. Treatments may include warfarin or clexane to help thin the blood. For these

children, precautions may be needed such as safety helmets for playtimes, which help to avoid knocks to the head and for older children, avoiding contact sports (see also Exercise).

BruisingFollowing Kawasaki Disease, if a child is taking aspirin and blood thinning medicines, they may bruise much more easily. It is important that nursery/school is aware of this and it is noted in the child or young persons individual record.

A repeat of some symptoms?Many children will experience repeated symptoms or "reactivation". This might happen when they have a cold, and they get a very high fever, red eyes or a rash, or peeling skin. This happens very frequently in children who have had Kawasaki Disease but almost always, it is not another episode of Kawasaki Disease. It’s the child responding differently to a bug or infection after Kawasaki Disease. These symptoms can be worrying for parents even though it’s not Kawasaki Disease.

It’s important to know that actually getting Kawasaki Disease again is very rare - and only happens in 2% of children. Speak to your doctor if you have concerns.

Flexibility & supportAfter a serious illness like Kawasaki Disease, children and their families may need support as normal routines such as nursery and school are resumed. Some flexibility will be essential to help children settle back in - especially if there are significant adjustments now needed, like protective safety helmets mentioned above or regular medication.

Some children will need routine follow up medical appointments and may miss school / nursery because of this.

Working together between schools and families is important to help minimise any negative impact of necessary changes like these.

About Kawasaki Disease

Kawasaki DiseaseUnderstanding

some of the possible longer term issues

A short guide for parents & carers of children affected by

Kawasaki Disease

If you would like more information please visit

www.societi.org.uk


societi.org.uksocieti.org.uk

Kawasaki Disease is a serious disease which affects hundreds of children in the UK each year. Most children affected are under 5 years but about 25% of patients are older children. Kawasaki Disease has a range of symptoms including:

Kawasaki Disease can be present with some or all of these symptoms. If a child has a persistent fever with any two or more of these symptoms please THINK Kawasaki Disease.

Most of these symptoms occur in the first few days of the illness, although they are often not all present at the same time. There are sometimes other symptoms too - loss of appetite, diarrhoea, tummy ache, vomiting and jaundice. Typically, children with Kawasaki Disease are very irritable.

Kawasaki Disease is a serious illness as it can cause coronary artery damage – damage to the blood vessels in the heart. Early treatment is key to reduce the risk of lifelong serious heart damage. Kawasaki Disease is the leading cause of acquired heart disease in children in the UK.

THANK YOUIf you have found the information in this leaflet helpful,

please consider making a donation to Societi Foundation. Your donations support our work to share information about

Kawasaki Disease and protect children’s hearts.

About this leafletThis leaflet has been written for parents and carers of children who have been affected by Kawasaki Disease. The information it contains has been reviewed by doctors from Societi Foundation’s Scientific Advisory Board. It is designed for parents and can also be shared with school teachers or care givers to explain more about some of the longer term issues which some children with Kawasaki Disease may experience.

See a doctor if you have concerns!This leaflet does not provide medical advice. It is intended to be a guide for general information purposes only. If you have concerns about your child, please contact your usual doctor or GP.

Important points:1. Whilst you’ll read about a range of possible longer term issues in this leaflet, following Kawasaki Disease most children experience just one or two, if any of these issues.

2. It’s important to know that the majority of longer term issues will resolve within one to two years or well before then, on their own without additional treatment for most children. If you have concerns, please see your usual doctor or GP.

3. If a child has serious, lasting complications following Kawasaki Disease, a medical care and action plan should be put in place at school / nursery. If this is necessary, your child’s doctor will provide guidance for this.

Persistent fever

Bloodshot eyes


RashSwollen glands Cracked lips/ strawberry tongue

Societi is a registered charity in England & Wales (no.1173755)


Our Kawasaki Disease awareness poster is intended as a waiting room resource for patients.

The poster can be printed at A4 or A3 size and can be laminated for display.

Kawasaki Disease is the leading cause of acquired heart disease in children in the UK. It’s time we changed that...

...Together we will

THINK Kawasaki Disease

societi.org.ukwww.justgiving.com/societi@Societi_UK_KD

@SocietiFoundation

Soci

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a re

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cha

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i Eng

land

and

Wal

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no. 1

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Poster data from Tulloh et al, Kawasaki Disease: a prospective population survey UK & Ireland 2013-15

Kawasaki Disease is predominantly a childhood illness. Its cause is unknown. Kawasaki Disease is the leading cause of acquired heart disease in children. It is often mistaken for other common childhood illnesses, leading to delayed treatment. Children who go untreated or who are treated later face significantly higher risks of developing serious complications including life long heart damage. Babies under one year are at greatest risk of serious heart damage Early diagnosis and treatment is critical. TOGETHER WE CAN CHANGE THIS!


Kawasaki Disease is increasingly common in the UK

If a child has a persistent high fever for 5 days or more, with TWO or more of these symptoms please THINK Kawasaki Disease

Kawasaki Disease can be present with some or all of these symptoms

Please EXPECT to see it, be READY to treat it!

Kawasaki Disease Symptoms:

Persistent fever


Cracked lips/’strawberry’ tongue

Bloodshot eyes

Rash

Swollen glands

saki Disease Symptoms:

ngers/toes

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Blood

glands

Kawas

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kkkkkkeedddddd llliips/raacckkkkk

RRRaasshhwolllleenn fifififinnnnggers/to

dddsshhhoott eyesoooddd

Swollllleenn gggllands

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EARLY TREATMENT IS KEY ...PLEASE DON’T DELAYChildren diagnosed and treated in less than 7 days from onset of fever

have a much reduced risk of life long heart damage

39%

28%

39% of babies with Kawasaki Disease develop coronary artery aneurysmsThis is too high!

28% of children overall have some heart damageThis is too high!

19%19% of children overall develop coronary artery aneurysmsThis is too high!

7+ days

The current average diagnosis time for Kawasaki Disease is 7.8 daysThis is too slow!

Current UK & Ireland Outcomes for Kawasaki Disease


With Thanks from Societi

Thank you for taking the time to look at the contents of this pack. We hope the information we have included is useful to you and your colleagues - and to your patients.

Sharing knowledge and growing the number of Primary Care clinicians who can recognise this often pernicious disease will always remain a core aim for Societi and WILL reduce acquired heart disease from Kawasaki Disease in children in the UK.

Thank you for reading. Together we can combat Kawasaki Disease and the time you’ve already invested in doing just that means such a lot.

With my very best wishes,

Rachael McCormack, Founderfor Societi Foundation

Thank you

Kawasaki Disease Symptoms

Persistent fever

Rash

Bloodshot eyes

Cracked lips/‘strawberry’ tongue


Swollen glands

If a child has a PERSISTENT FEVER

and two or more of these symptoms THINK KAWASAKI DISEASE!

Victoria Court, Holme Lane, Winthorpe, Newark, Notts NG24 2NU

[email protected]

societi.org.uk

Documents

Kawasaki Disease - Societi