Children With Children With NeurodisabilityNeurodisability

Dr Lesley McDonaldDr Lesley McDonald

Community PaediatricianCommunity Paediatrician

West CentreWest Centre

Community Child HealthCommunity Child Health

• 0-19 years0-19 years

• wide range of developmental difficulties / wide range of developmental difficulties / disabilitiesdisabilities

• holistic approachholistic approach

• partnership with parentspartnership with parents

• multidisciplinary working multidisciplinary working

• interagency working interagency working

• communicationcommunication

SettingsSettings

• Child development centres 0-5 yearsChild development centres 0-5 years

• Mainstream school healthMainstream school health

• MLD schoolsMLD schools

• Complex needs schools Complex needs schools

• EBD schoolsEBD schools

Child Development CentresChild Development Centres

• West Centre (West)West Centre (West)

• Bridgeton (East)Bridgeton (East)

• Glenfarg (North)Glenfarg (North)

• Southbank (South)Southbank (South)

ReferralsReferrals

• ODER one door entry referralODER one door entry referral

• referrals from GP, HV, RHSC, nursery, referrals from GP, HV, RHSC, nursery, educational psychologyeducational psychology

• referral centres for specialist referral centres for specialist developmental assessment developmental assessment

• links with other agencies – education, links with other agencies – education, social worksocial work

The team around the childThe team around the child

admin staff

clinicalpsychology

social work resource

team

occupationaltherapy

physiotherapy

specialisthealthvisitor

Paediatrician

Child and family

Other CDC servicesOther CDC services

neurologist

community autism team

speech andlanguagetherapy

orthoptist

geneticist

dietician

CDC

CDC linksCDC links

audiology

CAMHS

social workarea teams

PACT

RHSCtherapists

RHSCpaediatricians

health visitor

GP

nurseries

home visitingteachers

educational psychology

CDC

Children with additional Children with additional needsneeds

• ex – pretermex – preterm

• autismautism

• Down’s syndromeDown’s syndrome

• early developmental impairment early developmental impairment (“global developmental delay”)(“global developmental delay”)

Ex – preterm infantsEx – preterm infants

• EPICure studyEPICure study

• infants <26weeks gestationinfants <26weeks gestation

• at 2 ½at 2 ½ 49% no disability49% no disability

24% disability not severe24% disability not severe

24% severe disability24% severe disability

2% died2% died

1% no data 1% no data

Ex-preterm infantsEx-preterm infants

• at 6 yearsat 6 years unimpaired 20%unimpaired 20%mild disability 34%mild disability 34%moderate disability 24%moderate disability 24%severe disability 22%severe disability 22%

boys more likely to have moderate or boys more likely to have moderate or severe disabilitysevere disability

cognitive impairment most common of the cognitive impairment most common of the domains assesseddomains assessed

Neonatal follow upNeonatal follow up

• until 2 years correcteduntil 2 years corrected

• referral to CDC at any time if referral to CDC at any time if concernsconcerns

• if not, review at 3, 5, 7if not, review at 3, 5, 7

• important for primary care to refer to important for primary care to refer to secondary level services if concernedsecondary level services if concerned

AutismAutism

• SIGN guidelinesSIGN guidelines

• multidisciplinary specialist multidisciplinary specialist assessmentassessment

• Community Autism Team in GlasgowCommunity Autism Team in Glasgow

• ICD 10 criteriaICD 10 criteria

General “warning signs” - General “warning signs” - preschoolpreschool• delay or absence of spoken languagedelay or absence of spoken language• lack of awareness of / responsiveness to others, lack of awareness of / responsiveness to others,

unable to share pleasureunable to share pleasure• lack of pretend imaginative playlack of pretend imaginative play• qualitative impairment in non-verbal qualitative impairment in non-verbal

communicationcommunication• lack of pointinglack of pointing• lack of gaze monitoringlack of gaze monitoring• lack of initiation of activity or social playlack of initiation of activity or social play• unusual or repetitive hand and finger mannerismsunusual or repetitive hand and finger mannerisms• unusual reaction to sensory stimuliunusual reaction to sensory stimuli

General “warning signs” – General “warning signs” – school ageschool age

• communication impairmentscommunication impairments– abnormalities in language developmentabnormalities in language development– odd intonation, pitch etcodd intonation, pitch etc– persistent echolaliapersistent echolalia– reference to self as “you” “she/he” beyond 3reference to self as “you” “she/he” beyond 3– unusual vocabularyunusual vocabulary– limited use of language for communication and limited use of language for communication and

/ or tendency to talk only about specific topics/ or tendency to talk only about specific topics

General “warning signs” – General “warning signs” – school ageschool age

• social impairmentssocial impairments– inability to join play, or inappropriate inability to join play, or inappropriate

attemptsattempts– lack of awareness of classroom “norms”lack of awareness of classroom “norms”– easily overwhelmed by social and other easily overwhelmed by social and other

stimulationstimulation– failure to relate normally to adultsfailure to relate normally to adults– extreme reactions to invasion of personal extreme reactions to invasion of personal

spacespace

General “warning signs” – General “warning signs” – school ageschool age

• impairments of interests, activities, impairments of interests, activities, behavioursbehaviours– lack of flexible cooperative imaginative lack of flexible cooperative imaginative

play / creativityplay / creativity– inability to cope with change or inability to cope with change or

unstructured situationsunstructured situations– odd behaviours including unusual odd behaviours including unusual

responses to sensory stimuliresponses to sensory stimuli

Down’s syndromeDown’s syndrome

• recommended schedule of health recommended schedule of health checkschecks

• developmental progress slower than developmental progress slower than other childrenother children

1. Heart Disease1. Heart Disease

• by 6 weeksby 6 weeks– examination and echoexamination and echo– or examination, CXR and ECG at birth or examination, CXR and ECG at birth

and 6 weeksand 6 weeks

2. Thyroid2. Thyroid

• 10-20% affected, any age, diagnosis 10-20% affected, any age, diagnosis difficultdifficult

• low threshold for testinglow threshold for testing• preventable impairment if untreatedpreventable impairment if untreated• Guthrie at birthGuthrie at birth• T4 TSH thyroid antibodies at 1 yearT4 TSH thyroid antibodies at 1 year

– normal: repeat 2 yearlynormal: repeat 2 yearly– increased TSH or Ab’s: repeat 6-12 increased TSH or Ab’s: repeat 6-12

monthlymonthly

3. Eyes3. Eyes

• increased squint, cataractincreased squint, cataract• check carefully in first year, refer if check carefully in first year, refer if

concernsconcerns• second year: full assessment, second year: full assessment,

orthoptic, refractory, fundoscopyorthoptic, refractory, fundoscopy– abnormal: close follow up by abnormal: close follow up by

ophthalmologyophthalmology– normal: full review at 4 including vision, normal: full review at 4 including vision,

2 yearly thereafter2 yearly thereafter

4. ENT4. ENT

• conductive hearing loss 60-80%conductive hearing loss 60-80%

• SNHL 20% by age 20SNHL 20% by age 20

• partial upper airway obstructionpartial upper airway obstruction

• sleep apnoea sleep apnoea

• catarrhcatarrh

• neonatal hearing screeningneonatal hearing screening

• audiology annually until age 5audiology annually until age 5

• 2 yearly thereafter2 yearly thereafter

5. Growth5. Growth

• short stature part of syndromeshort stature part of syndrome

• 0-2 years: check wt, ht, OFC 0-2 years: check wt, ht, OFC frequentlyfrequently

• >2 years: check annually>2 years: check annually

• use both Downs and standard growth use both Downs and standard growth chartscharts

• red book should have Downs insertred book should have Downs insert

6. Others6. Others

• atlantoaxial instabilityatlantoaxial instability– no screening procedureno screening procedure– do not bar from sportsdo not bar from sports– at risk: GA, RTAat risk: GA, RTA– referrefer

•neck pain / pain behind earneck pain / pain behind ear•abnormal head positionabnormal head position•deteriorating head position deteriorating head position • loss of bladder / bowel controlloss of bladder / bowel control

Early developmental Early developmental impairment (EDI)impairment (EDI)

• formerly known as global formerly known as global developmental delaydevelopmental delay

• unhelpful term, implies difficulties unhelpful term, implies difficulties temporary and will “catch up”temporary and will “catch up”

• EDI a more appropriate diagnostic EDI a more appropriate diagnostic term, proposed at international term, proposed at international consensus conference in 2008consensus conference in 2008

EDI definitionEDI definition

• persistent significant limitations in persistent significant limitations in two or more developmental domainstwo or more developmental domains– motormotor– communicationcommunication– cognitive skillscognitive skills– social skillssocial skills– emotional regulation / behavioural skillsemotional regulation / behavioural skills– self care skillsself care skills

• onset before age 5onset before age 5

• not better explained by another not better explained by another established developmental disorderestablished developmental disorder

• reassess by school age or before age reassess by school age or before age 9 to review diagnosis9 to review diagnosis

AssessmentAssessment

• historyhistory

• examinationexamination

• developmental assessmentdevelopmental assessment

• investigations as appropriateinvestigations as appropriate

• multidisciplinary workingmultidisciplinary working

• follow up over timefollow up over time

• exciting advances in genetics and exciting advances in genetics and neuroimagingneuroimaging

SummarySummary

• wide range of disabilities which may wide range of disabilities which may be encountered in general practicebe encountered in general practice

• awareness of services availableawareness of services available

• if in doubt, phone to discussif in doubt, phone to discuss

Contact NumbersContact Numbers

• West 207 7100West 207 7100

• Bridgeton 531 6550Bridgeton 531 6550

• Glenfarg 531 6191Glenfarg 531 6191

• Southbank 201 0923Southbank 201 0923