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Health problemsHealth problems

ObesityObesityChronic constipationChronic constipation–– DietDiet–– Fluid intakeFluid intake–– LaxativesLaxatives

MovicolMovicolSenokotSenokotLactuloseLactulose

–– EnemasEnemas

Health problemsHealth problemsGastroGastro--esophageal esophageal refluxreflux

can result in can result in

h iti / t itih iti / t itioesophagitis / gastritis, oesophagitis / gastritis,

causing pain and poor causing pain and poor

appetite. If severe, appetite. If severe,

aspiration can resultaspiration can result

Health problems Health problems –– gastroesophageal gastroesophageal refluxreflux

Conservative measuresConservative measures–– propping upright after a propping upright after a

meal / thickening feeds meal / thickening feeds /slowing the rate of feeding /slowing the rate of feeding

Medications Medications antianti acid medications egacid medications eg–– antianti--acid medications eg acid medications eg ranitidine, omeprazole ranitidine, omeprazole reduce acidity of stomach reduce acidity of stomach and limit damage produced and limit damage produced by acid reflux by acid reflux

–– prokinetic agents such as prokinetic agents such as domperidone may reduce domperidone may reduce the amount of reflux the amount of reflux

Fundoplication Fundoplication

Health problemsHealth problemsLung diseaseLung disease

caused by aspiration from oromotor dysfunction or caused by aspiration from oromotor dysfunction or severe gastrosevere gastro--esophageal reflux. esophageal reflux.

Coughing or choking during meal times or wheezeCoughing or choking during meal times or wheezeCoughing or choking during meal times or wheeze Coughing or choking during meal times or wheeze during or after meals may signal the presence of during or after meals may signal the presence of aspiration aspiration

Videofluoroscopy may be helpfulVideofluoroscopy may be helpful

Health problems Health problems –– bone diseasebone disease

Increased skeletal fragilityIncreased skeletal fragilityIncreased risk of pathological fracturesIncreased risk of pathological fractures–– Strategies includeStrategies include

Ed ti i ti f l iEd ti i ti f l iEducation concerning consumption of calciumEducation concerning consumption of calciumAdequate exposure to sunlightAdequate exposure to sunlightVitamin D preparations Vitamin D preparations Use of newer drugs such as bisphosphonates Use of newer drugs such as bisphosphonates when indicatedwhen indicated

Health problemsHealth problems

Dental diseaseDental disease

Higher frequency of Higher frequency of

undescended testesundescended testes

Puberty / menstrual issuesPuberty / menstrual issues

Emotional problemsEmotional problems

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Consequences of the motor Consequences of the motor disorderdisorder

Saliva control problemsSaliva control problems

Speech pathology Speech pathology

techniquestechniques

Orthodontic appliancesOrthodontic appliances

MedicationMedication

Benzhexol Benzhexol

hydrochloridehydrochloride

GlycopyrrolateGlycopyrrolate

Consequences of the motor Consequences of the motor disorderdisorder

Botulinum toxin Botulinum toxin

SurgerySurgery

Relocation of Relocation of

submandibular submandibular

ducts and excision ducts and excision

of sublingual glandsof sublingual glands

Monitoring of adverse effectsMonitoring of adverse effects

19 children with cerebral palsy following surgery19 children with cerebral palsy following surgery

75 other children with cerebral palsy75 other children with cerebral palsy

Surgical group had significantly more caries than the Surgical group had significantly more caries than the comparison group (P<0.0001)comparison group (P<0.0001)

Consequences of the motor Consequences of the motor disorderdisorder

IncontinenceIncontinence

cognitive deficitscognitive deficits

lack of opportunitylack of opportunitylack of opportunitylack of opportunity

inability to communicateinability to communicate

detrusor overactivity causing urgency and detrusor overactivity causing urgency and frequencyfrequency

How does one manage equinus?How does one manage equinus?

Tom Tom –– aged 3 yearsaged 3 yearsWalked independently at 27 monthsWalked independently at 27 monthsHis calves are now tighteningHis calves are now tighteningg gg gHe walks on his toesHe walks on his toesParents are concerned that he is Parents are concerned that he is falling over more and hurting himselffalling over more and hurting himself

Assessment of spasticityAssessment of spasticity

1.1. Is spasticity interfering withIs spasticity interfering withfunctionfunctioncarecarequality of lifequality of life

2.2. Is the spasticityIs the spasticitylocalised?localised?generalised?generalised?

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Spasticity managementSpasticity management

Localised spasticityLocalised spasticityOrthotics / splintingOrthotics / splinting

Serial castingSerial casting

Botulinum toxin A Botulinum toxin A injectionsinjections

Botulinum toxinBotulinum toxinNeurotoxin type A Neurotoxin type A produced by produced by C.BotulinumC.BotulinumInjection of BTXInjection of BTX--A A jjresults in a results in a reversiblereversibleblockade of ACh blockade of ACh release at neurorelease at neuro--muscularmuscular junction junction

Generalised spasticityGeneralised spasticity

Kathryn aged 13 yearsKathryn aged 13 yearsSevere spastic quadriplegiaSevere spastic quadriplegiaCan be walked but getting increasingly Can be walked but getting increasingly diffi ltdiffi ltdifficultdifficultLegs are stiffLegs are stiffProblems with bathing, dressing and Problems with bathing, dressing and toilettingtoiletting

Spasticity managementSpasticity managementGeneralised Generalised spasticityspasticity–– medicationsmedications

DiazepamDiazepamBaclofenBaclofenDantroleneDantrolene

–– intrathecal intrathecal baclofenbaclofen

–– selective dorsal selective dorsal rhizotomyrhizotomy

Role of intrathecal baclofenRole of intrathecal baclofen

Used for children with Used for children with

severe spasticity severe spasticity

interfering with care, interfering with care,

comfort and functioncomfort and function

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Consequences of Consequences of the motor disorderthe motor disorder

Orthopaedic problemsOrthopaedic problemsequinus foot deformityequinus foot deformity

hamstring overactivityhamstring overactivity

subluxed / dislocatedsubluxed / dislocatedsubluxed / dislocated subluxed / dislocated hipships

upper limb problemsupper limb problems

scoliosisscoliosis

Orthopaedic issuesOrthopaedic issues

In the young child, In the young child, mainly issues relating mainly issues relating to subluxed / to subluxed / dislocating hipsdislocating hips(GMFCS 3,4,5)(GMFCS 3,4,5)Older child Older child ––lengthening / tendon lengthening / tendon transfers, SEMLStransfers, SEMLS(GMFCS 1,2,3)(GMFCS 1,2,3)

Deterioration in cerebral palsyDeterioration in cerebral palsy

Emotional stressEmotional stress

Uncontrolled epilepsyUncontrolled epilepsy

Worsening contracturesWorsening contracturesWorsening contracturesWorsening contractures

Intercurrent infectionIntercurrent infection

Wrong diagnosisWrong diagnosis

Inappropriate anticonvulsantsInappropriate anticonvulsants

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How do we evaluate what we do?How do we evaluate what we do?

Few, or no,Few, or no,measurement measurement toolstools

No means of No means of evaluation ofevaluation ofprogramsprograms

Measurement toolsMeasurement tools

Gross Motor Gross Motor Function Function MMMeasureMeasure

Other tools developedOther tools developedPEDIPEDIWeeFIMWeeFIMThe Tardieu ScaleThe Tardieu ScaleModified AshworthModified AshworthModified Ashworth Modified Ashworth Scale and range of Scale and range of motion at specific motion at specific jointsjointsGoal Attainment Goal Attainment ScaleScale

Assessment of upper limb Assessment of upper limb functionfunction

QUESTQUEST

Melbourne Melbourne Assessment ofAssessment ofAssessment of Assessment of Upper Limb Upper Limb FunctionFunction

MACSMACS

Assessment of upper limb function: The Assessment of upper limb function: The Manual Abilities Classification ScaleManual Abilities Classification Scale

How children use their How children use their hands when handling hands when handling objects in daily activities. objects in daily activities. To reflect the child’s To reflect the child’s typical manual typical manual

f tf tperformance, not performance, not maximal capacity. maximal capacity. It classifies what children It classifies what children do when using one or do when using one or both of their hands for both of their hands for activities, rather than activities, rather than classifying each hand classifying each hand separately. separately.

Assessment of upper limb function: The Assessment of upper limb function: The Manual Abilities Classification ScaleManual Abilities Classification Scale

Used for children 4Used for children 4--18 18 yearsyearsWhen defining the When defining the five levels of the five levels of the MACS, primary MACS, primary criterion was that the criterion was that the distinctions in manual distinctions in manual ability should be ability should be clinically meaningful.clinically meaningful.

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Assessment of upper limb function: The Assessment of upper limb function: The Manual Abilities Classification ScaleManual Abilities Classification Scale

Level 1: Handles objects easily and successfullyLevel 1: Handles objects easily and successfullyLevel 2: Handles most objects but with somewhat Level 2: Handles most objects but with somewhat

reduced quality and / or speed of achievementreduced quality and / or speed of achievementLevel 3: Handles objects with difficulty: needs helpLevel 3: Handles objects with difficulty: needs helpLevel 3: Handles objects with difficulty: needs help Level 3: Handles objects with difficulty: needs help

to prepare or modify activitiesto prepare or modify activitiesLevel 4: Handles a limited selection of easily Level 4: Handles a limited selection of easily

managed objects in adapted situationsmanaged objects in adapted situationsLevel 5: Does not handle objects and has severely Level 5: Does not handle objects and has severely

limited ability to perform even simple actionslimited ability to perform even simple actions

Measurement toolsMeasurement tools

Development of Development of a quality of life a quality of life measures formeasures formeasures for measures for children with children with cerebral palsy cerebral palsy CPCP

Conventional therapiesConventional therapies

Physiotherapy Physiotherapy –– NDT (Bobath)NDT (Bobath)–– Conductive Conductive

EducationEducationEducationEducation(Peto)(Peto)

Occupational Occupational therapytherapySpeech pathologySpeech pathology

Alternative therapiesAlternative therapies

1.1. Yearning to “do something”Yearning to “do something”2.2. More optimistic approach from More optimistic approach from

alternative sources, for example, alternative sources, for example, questions are answered withoutquestions are answered withoutquestions are answered without questions are answered without hesitationhesitation

3.3. Publicity in the mediaPublicity in the media4.4. Failure to provide parents with facts Failure to provide parents with facts

about traditional and acceptable about traditional and acceptable treatment modalitiestreatment modalities

Working with familiesWorking with families

Child is part of a family Child is part of a family

unitunit

A supportive environment A supportive environment

builds selfbuilds self--esteem and esteem and

confidenceconfidence

Parents need practical Parents need practical

helphelp

Working with familiesWorking with families

Provision of Provision of

information is information is

essentialessential

Parents as partnersParents as partners

Family centred Family centred

approachapproach

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Other resourcesOther resourcesParent support groupsParent support groupsAssociation for Children Association for Children with a Disabilitywith a DisabilityCerebral Palsy Support Cerebral Palsy Support NetworkNetworkNetworkNetworkNoah’s ArkNoah’s ArkDHSDHSScope / Yooralla/ CPECScope / Yooralla/ CPEC

Working with familiesWorking with familiesHealth and wellHealth and well--being of being of

caregivers (468 families)caregivers (468 families)Child behaviourChild behaviour

More problems associated More problems associated with lower levels of bothwith lower levels of bothwith lower levels of both with lower levels of both psychological and psychological and physical health of the physical health of the caregiverscaregivers

(Pediatrics 115:2005)(Pediatrics 115:2005)

Working with familiesWorking with familiesHealth and wellHealth and well--being of being of

caregivers (468 families)caregivers (468 families)Caregiving demandsCaregiving demands

Less caregiving demands Less caregiving demands associated with better associated with better physical and physical and psychological wellpsychological well--being being of caregivers of caregivers Family function Family function

Higher functioning Higher functioning associated with similar associated with similar outcomesoutcomes