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Assessment and Treatment of Feedingin Children and Youth with CerebralPalsy
Marianne E. Gellert-Jones
ContentsIntroduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Natural History . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Examples of How the Health Condition (CP) May Impact Feeding . . . . . . . . . . . . . . . . 3Diet History and Bowel/Bladder Elimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5Feeding History/Caregiver Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6Clinical Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Oral Motor Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8Feeding Observation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Self-Feeding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Trial Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16Cervical Auscultation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Caregivers and the Child . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Physicians, Dentists, and Physician Assistants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20Psychologist . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Dietitian . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Speech and Language Pathologist (SLP) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Occupational Therapist (OT) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Physical Therapist (PT) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Social Worker . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21Educational/Support Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
AbstractA significant number of children diagnosedwith cerebral palsy (CP) present with earlyand ongoing histories of feeding dysfunction.This condition may cause stress and presentchallenges to both children and caregiversand may create barriers to enjoying social
M. E. Gellert-Jones (*)Clinical Feeding Specialist/Speech Language Pathologist,HMS School for Children with Cerebral Palsy,Philadelphia, PA, USAe-mail: [email protected]
© Springer Nature Switzerland AG 2020F. Miller et al. (eds.), Cerebral Palsy,https://doi.org/10.1007/978-3-319-50592-3_176-1
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mealtime experiences. CP may result in theneed for intensive medical interventions tosupport nutritional and hydration needs overtime. The severity of the motor disturbance inCP is often highly correlated with the degree offeeding dysfunction. The link between CP andthe functional activity of feeding requires aholistic approach to assessment and treatment.The use of the International Classification ofFunctioning, Disability, and Health (ICF)framework (WHO 2007) to inform assessmentand intervention needs for the child and care-giver relies on understanding the interplayamong body structure and function to supportthe physiological demands of feeding, the abil-ity of the professionals and caregivers to createopportunities for participation in feeding andmealtime activities, the appropriate modifica-tions being made to the environment, and theconsiderations of the caregiver and child rela-tionship and the personal concerns that maysupport or limit the activity of feeding for chil-dren with cerebral palsy. Feeding assessmentand treatment is often cyclical throughout thecourse of effective intervention as reassessmentinforms adjustments to treatment. The manage-ment of positioning provides the cornerstonethat supports respiration, promotes swallowingsafety, and improved alignment of feedingstructures. Experiential training and theengagement of an interdisciplinary team thatincludes all stakeholders including the care-givers are among the most important elementsfor success in treatment of feeding.
KeywordsCerebral palsy · Feeding dysfunction · Posturalstability · Interdisciplinary team · Caregivertraining
Introduction
Feeding, eating, and engaging in enjoyable meal-times are hallmarks of what most would consideras essential to a full and satisfying life. Childrenand youth with cerebral palsy (CP) often present
with significant barriers to participating in meal-times and oral feeding across environments. Feed-ing creates unique challenges for both families athome and the professionals serving these childrenand their families in medical, educational, andcommunity settings. Comprehensive assessmentand treatment of feeding dysfunction within thischallenging population can create opportunitiesfor children who present with varying degrees ofneuromuscular involvement to engage in oralfeeding experiences across all environments.
Natural History
CP is described as a static impairment, though itdoes have an expected progression of motor dis-turbance, which may impact the feeding abilitiesof children with this diagnosis (Haak et al. 2009).Children who present with more severe motordysfunction are most vulnerable to changes inbody structure and function over time. As withall children, there is an ever-increasing demandfor fluids and calories to support adequate devel-opment and growth. Children with CP who pre-sent with feeding and swallowing needs oftenpresent with increased challenges to adequateoral consumption to meet nutritional and hydra-tion requirements. As these children age, thestruggles surrounding nutritional and hydrationsufficiency may become more pronounced.Implementation of supplemental tube feedings isnot uncommon in children with more severemotor disturbances to sustain their growth andhydration needs. Many of these children presentwith significant illnesses or orthopedic concernsresulting in the need for hospitalizations andpotential surgeries. These illnesses and surgicalinterventions may be problematic for the child toendure if they do not have sufficient hydration andnutritional stores to withstand the physical stressof healing and recovery.
Calis et al. 2008 reported that dysphagia, invarying degrees of severity, was present in up to99% of children presenting with a diagnosis ofCP. Within this population nearly all present withfeeding disruptions at some point in their lives,
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and most disruptions are present at birth. Medicaland technological advances result in greater num-bers of children with prematurity (and significantmedical needs) surviving with feeding difficulties(Arvedson 2008). Feeding dysfunctions becomemore significant resulting in under- ormalnourishment in nearly all children presentingwith more severe forms of CP (Gross Motor Func-tion Classification System (GMFCS) IV and V)(Penagini et al. 2015). Difficulties with hydrationand maintaining sufficient calories for growthmost often result in supplemental tube feedings,particularly as these children begin to age andrequire additional calories to see them throughthe recovery of pending medical procedures, ill-nesses, and growth into adulthood.
Goday et al. 2019 proposed a new definitionthat highlights the multifaceted nature of pediatricfeeding disorders and aligns this definition withcomponents identified in the ICF. The result is adefinition that is more thorough in scope and thusassists in developing a treatment model f that ismore inclusive of all the potential componentsthat impact feeding including the medical, nutri-tional, feeding abilities and psychosocial aspectsof feeding. This holistic definition considersissues that are present within families and createsopportunities to engage in training and shareddecision-making and address familial concerns.Additionally, Goday et al. (2019) identify a com-mon terminology that will translate across disci-plines, a beneficial aspect of the new definition.
Assessment remains a driving force in plan-ning treatment to address feeding needs in chil-dren with complex neuromuscular presentations(Arvedson 2008; Manno et al. 2005). Thoroughassessment with observation and input from fam-ilies along with interdisciplinary medical involve-ment and diagnostic measures will help identifythe prioritization and the method and scope oftreatment. Ongoing assessment, and active inclu-sion of all team members, will help monitor andinterpret the results of treatment, so goals andinterventions will advance along with the needsof the child and caregiver (Sheppard 1995; Morrisand Klein 2000; Arvedson 2008, 2013).
Assessment
Effective treatment programs designed to addressthe feeding needs of children with CP should becreated based upon the results of a comprehensiveand individualized evaluation. Such assessmentsmust include a thorough survey of the child’shistory so issues and concerns may be fullyexplored and addressed before initiating treatment(Manno et al. 2005; Arvedson 2008; Andrew et al.2012).
The ICF Framework (WHO 2013) can providea concise basis for the treatment of the feedingneeds of children with CP (ASHA 2016). The ICFplaces the functional activity of feeding squarelyat the center of the model and demonstrates themanner in which each of the components (healthcondition, personal dimensions of body structuresand function impairment, activity limitation andparticipation restrictions, and environmental andpersonal factors) interacts and influences an indi-vidual’s ability to function in activities of dailyliving. This view of the interactions among allareas of the ICF allows the examiner to developa more holistic view of the strengths, limitations,and needs of the child with CP across the manyenvironments in which the child is expected tofunction (Imms et al. 2015). It is the intent ofthis chapter to use the ICF framework as a com-prehensive tool to guide practitioners in theirassessment and provision of services to childrenwith CP who present with feeding needs. Beloweach component will be individually examined,and examples of specific areas of need that may beconsidered will be identified. The culminationwill be a completed framework that demonstratesthe active interplay among the various areas of theICF that must be considered to promote optimalassessment and intervention surrounding the feed-ing needs of children with CP and their families.
Examples of How the Health Condition(CP) May Impact Feeding
Assessment begins with understanding the healthcondition of the child with CP. The presentation ofthe condition and overall evaluation of the child’s
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tone and the structures impacted must be defined(Paulson and Vargus-Adams 2017). Understand-ing the severity and degree of motor dysfunctioncan be a significant factor, as Benefer et al.(2017a) determined in their study which reportedthat in the preschool years, two in three childrendiagnosed with CP also presented with oropha-ryngeal dysphagia. Children who tend to resolvetheir oropharyngeal dysphagia within the first5 years of life have less severe forms of CP(GMFCS levels I and II), while children whopresent with more significant motor dysfunction(GMFCS levels III, IV, and V) tend to persist withoropharyngeal dysphagia, along with concernsrelated to their nutritional needs, respiratoryissues, and parental stressors (Benefer et al.2017b). Additionally, the degree to which chil-dren present with increased motor dysfunction asdefined by the GMFCS is associated with the levelof dysfunction described by the Eating and Drink-ing Ability Classification Scale (EDACS) (Sellerset al. 2013; Paulson and Vargus-Adams 2017).Understanding the progression of CP and poten-tial manifestations of abnormal muscle tonewithin this population will aid the examiner inplanning for and addressing feeding needs(Ferluga et al. 2019).
Examples of Body Function and Structureimpairments that may impact the feeding abilityof children with CP are listed below. These factorsmay be identified on physical exam, throughassessment of the child’s medical history andreports, and clinical or school-based therapyreports.
Body Function and StructureTonal abnormalities (strength, control, andendurance)
Positioning and alignment challengesCardiac defectsDysphagiaRespiratory concernsCongenital abnormalities (syndromes)Neurological concerns (seizure disorder,
ASD, etc.)Secretion management and drooling
Gastrointestinal concerns (GER, consti-pation, etc.)
Food intolerances and allergiesNutrition, hydration, and growth
challengesCognitive statusSensory needsImpact of illness and hospitalizationOther medical issues
The body function and structure component ofthe ICF is derived from the health condition of thechild with CP. Children diagnosed with CP pre-sent with multiple systems that are impacted bytheir diagnosis of neurological impairment. Acomplete medical history is essential and mayreveal areas of concern that may be missed other-wise and that may affect the child’s ability toengage in successful feeding treatment. Examin-ing reports from other team members regardingthe child’s medical and therapeutic history pro-vides valuable insight. Thorough medical andtherapy record review will inform the feedingprofessional of care plans that are currently activeand other care plans that may have beenimplemented. An examination of current and pre-vious medications and procedures that the childhas undergone is part of obtaining a completemedical history. Additionally, a review of hospi-talizations, emergency department visits, and a listof current medical concerns is of paramountimportance in obtaining a completed examinationof the child’s medical history.
Summary information from medical appoint-ments provides a history of the child’s growthpatterns across their lifespan which provides amore thorough understanding of health, nutri-tional status, and the severity of feeding chal-lenges and needs. It is essential to note thegrowth trends of the child and to determine ifthey are accepting sufficient nutrition to supportgrowth (Kuperminc et al. 2013). Often the point atwhich feeding begins to impact the child willshow as the point at which they fall below growthcurve trajectories. Children with significant neu-rological impairments may not present with
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weight or growth patterns that match their typi-cally developing peers. Most often adequategrowth patterns will be determined based uponthe child’s maintenance of their own growthcurve over time (Kuperminc et al. 2013). Someconsideration may be given to the use theCP-specific growth charts when plotting growthtrajectories and trends in children with CP(Brooks et al. 2011).
Diet History and Bowel/BladderElimination
Requesting a detailed diet history and record ofbowel and bladder elimination patterns from thecaregiver can provide meaningful informationabout feeding processes for the child with CP. Itmay also offer additional information about foodpreferences, variety, volumes, food textures, andfeeding regimens. Diet histories gathered for chil-dren with feeding dysfunction often reveal inade-quate intake of food and fluids (Penagini et al.2015). Input from a dietitian can assist in com-pleting an individualized assessment for eachchild including their optimal nutritional andhydration needs for weight gain and growth.
Patterns of bowel and bladder elimination canprovide further information about tolerance offeeds, bowel and bladder function, and the overallhealth of the child. Constipation is often an issuein children with CP secondary to their motordeficits (Penagini et al. 2015). It is also a concernand can be compounded when children havedecreased fluid intake, less total volume, and lim-ited fiber in their diets. When children diagnosedwith CP do not have adequate bowel manage-ment, they may experience ongoing issues withbowel elimination and gastrointestinaldysmotility (Andrew et al. 2012). Gastroesopha-geal reflux and developing a sense of hunger andsatiety may also be related to constipation.
Bladder elimination patterns characterized bysmall volumes, incontinence, and concentratedurine may be indicative of poor hydration. Hydra-tion also may have a direct influence upon theregularity of bowel elimination patterns. It hasbeen reported that as many as 60% of children
with CP present with feeding and gastrointestinalissues surrounding and complicated by constipa-tion (Caramico-Favero et al. 2018). Establishing acomplete understanding of oral intake and elimi-nation patterns is essential to recognizing poten-tial barriers to comfort, overall health, andsuccessful feeding.
The following table presents examples of someactivity limitations and participation restrictionsthat may be detected when using a holistic exam-ination and should be addressed in the plan of careto improve feeding ability in the child with CP.
Activity and ParticipationActivity – Child’s functional motor abilityto complete feeding/eating tasks during
these eventsParticipation – Adaptation of the envi-
ronment for the child to participate withfamily, friends, and classmates
Daily meal and snack time celebrationsand socialization
Peer interactionsEducational activities in school and
community activities outside of the home
important to examine and include in a plan of careto address the feeding needs of the child with CP.
Listed below are examples of potential envi-ronmental and personal factors that may be impor-tant to examine and include in a plan of care toaddress the feeding needs of the child with CP.
Environmental and Personal FactorsPersonal Factors (Family, Teacher,Trainer)
Familial stressors and attitudesFood preferencesFeeder preferencesBehavioral concernsCultural factors and family customsFinancial needsAbility to attend school (willingness and
training of feeders)
(continued)
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Safety across environments when feedingFood preparation and texture modifica-
tions for individual needsEnvironmental Factors (Equipment, Set-
ting, Food Availability)Appropriate seating/positioning availabilityAdequate time allowance to feedAppropriate utensils availabilityAppropriate supports available for feed-
ing needsAvailability and access to appropriate
and affordable foodsAccess to medical careAccess to training and support for fami-
lies and feeders
Feeding History/Caregiver Interview
The participation, environmental, and personalfactors that impact feeding may be detected via acomprehensive caregiver interview. The caregiverinterview may be helpful in understanding thechild’s developmental progression and the dura-tion and scope of current feeding problems(Sheppard 1995; Morris and Klein 2000; Mannoet al. 2005; Andrew et al. 2012). The feedingproblem from the perspective of the caregiverand the priorities of the family regarding treatmentmay be identified. The caregiver may providemore information about cultural and family cus-toms as well as socioeconomic factors that mayimpact feeding and mealtime routines. Thedescription of the routines involved in typicalmealtimes provide additional information regard-ing structure, feeding difficulties, volumes, andthe time it takes to feed a child. It is also helpfulto understand the variety of environments inwhich the child is fed and the number of individ-uals involved in the feeding the child.
Parental reports of stressful mealtimes arehighly correlated with severity of motor distur-bances and the severity of feeding difficulties inchildren with neurological impairments (Sullivanet al. 2000; Benefer et al. 2017). It is essential toidentify the stress experienced by the child and
family to fully understand the impact of the child’sfeeding dysfunction. Caregiver reports of lengthymealtimes; failure to advance texture; observanceof choking, gagging, and vomiting during meals;or concerns of respiratory distress are significantindicators of severe feeding dysfunction in chil-dren with CP (Arvedson 2008). Other red flagssurrounding feeding may be concerns aboutweight gain, overall health, nutrition, and hydra-tion needs.
When there has been a history of unsuccessfulmealtimes, it may create challenging psychosocialissues for families and children with feedingneeds. When the caregiver provides a completehistory surrounding the child’s feeding dysfunc-tion, a more detailed timeline of the feeding issuesand concerns may emerge. Studies document thatfeeding concerns are present in almost all childrenwith CP beginning in the neonatal period. In astudy by Reilly et al., 60% of children who werelater diagnosed with CP initially presented withsignificant feeding dysfunction. Of the childrenstudied, 57% presented with issues related tocoordination of sucking, while 38% had issuesconcerning swallowing problems in the first12 months of life. They reported that 80% of thechildren had been fed non-orally on at least oneoccasion and greater than 90% had clinically sig-nificant oral motor dysfunction. One in three ofthese children was severely impaired and there-fore at high risk of chronic undernourishment(Reilly et al. 1996).
Clinical Assessment
Clinical assessment must examine the whole childwith CP. While the assessment of oral motor skillsis essential in understanding the integrity andfunction of oral-facial structures during feedingand swallowing, a thorough assessment willinclude identification of issues affecting respira-tion, postural stability, and tone in the child diag-nosed with CP (Woods 1995).
Feeding and swallowing are activities thatinvolve multiple body systems. Precise and well-coordinated interactions among these structuresare required to produce optimal function. Postural
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stability, postural alignment, and muscle tone sig-nificantly impact the alignment and function ofthe oropharyngeal musculature and the gastroin-testinal and respiratory systems involved in feed-ing and swallowing. Pelvic alignment influencesthe alignment of the trunk, head, and neck and willimpact the child’s ability to function optimally innumerous functional activities including feedingand swallowing (Woods 1995). Pelvic alignmentdirectly influences function for feeding, respira-tion, and coordination for safe and efficientswallowing (Manno et al. 2005).
Assessment of the trunk and development ofthe muscles of respiration that aid in ribcage sta-bility are valuable to consider secondary to theneed for respiratory coordination and control dur-ing feeding and swallowing (Manno et al. 2005).Postural support for adequate alignment of thetrunk, engagement of all the muscles of feedingand swallowing, and the recruitment of effectivecough techniques are all impacted by the devel-opment of trunk musculature and the muscles thathelp shape and stabilize the ribcage. Children witha wide repertoire of controlled movement in thestructures and musculature of the trunk typicallyhave a ribcage that is more typically shaped anddeveloped. Conversely, children presenting withmore significant motor impairments that limited avariety of movements often present with notablechest wall deformities that limit the overall func-tion of respiration and postural stability and mayadversely influence all phases of the cough. Thecough is an essential compensatory technique toemploy during feeding and swallowing. Assess-ment of the phases of the cough may provideinsight into potential areas of need regarding thechild’s secretion management and ongoing respi-ratory health (Mishra et al. 2018; Massery 2006).
The interaction between the gastrointestinaland respiratory systems needs to be consideredwhen assessing the trunk and ribcage. These twosystems share space within the thoracic cavity andare contained within the ribcage. The diaphragm,which is the primary muscle of respiration, pro-vides a separation between the abdomen and thelungs. The descent of the diaphragm upon inhala-tion creates pressure changes within the thoraciccavity. It also causes the displacement of internal
organs, which can influence postural, respiration,comfort, and peristalsis throughout the gastroin-testinal system. The ribcage and trunk are not inthemselves sturdy structures, but they are depen-dent upon positive pressures within the thoraciccavity to promote postural support. Glottal closureand the musculature of the pelvic floor help pro-vide constant positive pressure in the trunk. Anydisruption in the maintenance of that positivepressure can cause collapse or instability of thetrunk. Therefore, children who present withuncoordinated vocal fold closure, tracheostomies,or other issues allowing for a disruption in theconstant positive pressures in the trunk are morevulnerable to problems with respiratory control,pulmonary hygiene, gastrointestinal dysmotility,trunk control and stability, and other associatedissues. Adequate ventilation, secretion manage-ment, and pulmonary hygiene may also be atrisk, secondary to reduced ability to recruit suffi-cient inspiratory support and control to engage ineffective cough techniques. The ability to protectand clear the airway via cough or strong vocali-zation improves the child’s ability to participate incompensations that can improve safety in theswallowing of secretions, food, and liquids. Pres-sure imbalances within the thoracic cavity mayalso impact endurance, muscle tone, and posturalstability (Massery 2006).
When the diaphragm descends appropriately, italso approximates the lower esophageal sphincter(LES) providing a point of increased pressure.The increased pressure allows compression ofstomach contents and decreases the possibility ofesophageal reflux. If the diaphragm is poorlyaligned, secondary to abnormal ribcage develop-ment (See Fig. 1), it is also likely that as thepressure at the LES may be reduced. The casessuch as this, the diaphragm may not promoteperistalsis or provide any increase in pressure atthe LES. When such imbalances exist in the tho-racic cavity, then gastrointestinal issues and respi-ratory support for feeding and swallowing are notable to be adequately managed by the body sys-tems (Massery 2006). A description of variousatypical ribcage presentations, and the potentialimpact on respiration, gastrointestinal functionand positioning may be found in below (Table 1).
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Positioning in seating begins with a full assess-ment of the child’s pelvic alignment in their cur-rent seating system or feeding chair. Anunderstanding of the manner in which currentequipment promotes or inhibits adequate posi-tioning needs for feeding and swallowing is
vital. Obtaining a list of seating equipment towhich the child has access is a necessary part ofan evaluation of feeding needs. Achieving ade-quate alignment is essential to the overall health,function, and well-being of every child who pre-sents with motor challenges regardless of theirability to engage in oral feeding. Identifyingequipment that is available to the child, whenand how it was purchased, will inform the teamabout what equipment for positioning is availablefor the child to use. It will identify when newequipment may be ordered if the fit and functionof the current equipment is not working for thechild. For more information on postural controland stability, please refer to the chapter on▶ “Pos-tural Control in Children and Youth with CerebralPalsy” (See Therapy Management: Body Struc-tures and Function.) (Figs. 2 and 3).
Oral Motor Assessment
Assessment of oral structures begins with anassessment of overall oral-facial tone and symme-try. It is important to note if there are asymmetriesof the skull. Asymmetry or plagiocephaly mayprovide information about the resting position ofthe head, the influence of gravity on structures ofthe face, andmuscle imbalances that the child may
Table 1 Ribcage presentation and potential impact
Ribcagepresentation Possible causes
Potential impact of chest wall deformities onfunction
Triangular shape Decreased upper extremity (UE) weightbearing, poor shoulder girdle development,decreased postural stability and control
• # trunk and ribcage mobility, decreasedribcage compliance• Inefficient respiratory patterns for cough,secretion management, and coordination ofrespiration and swallowing• Fatigue and inability to sustain adequateventilation during all ADL’s•Collapse of ribcage limiting optimal volumefor respiration• Paradoxical breathing patterns increasingnegative pressure in upper thoracic cavity• Inefficient descension of the diaphragm• " opportunities for gastroesophageal refluxsecondary to imbalances of inter- thoracicand inter-gastric/abdominal pressures• " in use of accessory musculature forbreathing
Pidgeon chest orbarrel shape
Increased tightness in UE range of mn andapproximation to lateral portions of ribcage,prolonged positioning in side-lying
Flattened chest insagittal plane orpectus excavatum
Neuromuscular weakness, prolonged periodsof reclined positioning
Bell-shaped orflaring of lower ribs
Decreased activation of abdominalmusculature and neuromuscular weakness
Asymmetry ofribcage
Scoliosis, postural, and pelvic asymmetry ormalalignment
Fig. 1 Chest wall deformity associated with decreasedthoracic stability and management of gastrointestinal andrespiratory function to support feeding (note: the feedingtube)
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be experiencing in the trunk, head, and neck.Children with more significant limitations inmobility are more vulnerable to increasing asym-metry of the oral-facial structures overtime, due topersistent positioning and poor postural control ofthe pelvis, trunk, head, and neck musculature(Kawakami et al. 2013). The impact of gravitywhen positioning is static also has a significantimpact on all the structures that influence overallfunction within the body as well as feeding,swallowing, and respiration.
Oral-facial structures should be assessed forsymmetry and for function at rest and in move-ment (Sheppard 1995). The functional movementand grading of oral structures will provide impor-tant information regarding the efficiency and con-trol of feeding and swallowing structures. If thechild is able to perform volitional motor skillsupon request, this may be a potential avenue fortreatment and the development of compensatorystrategies to improve safety and function.
A complete evaluation of oral structures willdescribe labial tone, lip closure and opening,labial mobility, and strength of labial musculature.The child’s ability to employ a variety of oralpostures including labial opening, closure,rounding, pursing, and retraction of lips may indi-cate range, mobility, and control of this primaryoral structure. The efficiency of labial closure andthe retention of secretions, food, and liquids maybe impacted by the child’s positioning, posturalstability, and control (Sheppard 1995).
Drooling and loss of secretions may be animportant indicator of decreased oral functioning.Drooling may be present in children who havechallenges in creating sufficient anterior closureto initiate a swallow or children who have sensoryissues related to the awareness of pooled or over-flowed secretions (Sheppard 1995). Drooling mayoccur in all instances, in specific positions, orsolely when the child has motor challenges. Theviscosity of the drool may also give insight intoFig. 2 Postural malalignment with a posterior pelvic tilt
Fig. 3 Posturalmalalignment with ananterior pelvic tilt
Assessment and Treatment of Feeding in Children and Youth with Cerebral Palsy 9
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the child’s hydration needs. Some children diag-nosed with CP have undergone surgeries and bot-ulinum injections or are on medications to assistwith secretion management. Because control ofsecretions involves many aspects of providingfeeding treatments to a child with neuromuscularimpairments, all factors involved must be identi-fied. Everything from the ability to break downfoods during oral feeding to issues with pulmo-nary hygiene and aspiration and even social inter-actions are potential concerns surroundingdrooling issues for children with CP and theirfamilies. For additional information on drooling,please refer to the chapter on “▶Medical Man-agement of Sialorrhea in Children with CerebralPalsy” (Section 2: General Medical: Ear, Nose,and Throat).
Dental condition, alignment, and oral hygieneprovide insight into the child’s ability to use theteeth for feeding tasks. Lip closure and approxi-mation of oral structures for feeding, bolus manip-ulation, and transport may be impacted. Thepresence of dental caries and dental disease isgreater for those children presenting withincreased motor severity (Sedky 2017). Dentalcaries and decay may result in increased levelsof bacteria in oral secretions. Aspiration ofbacteria-laden secretions is an associated risk foraspiration pneumonia (Ueda 2011). Malalignmentof dentition may result from a persistent suckle ortongue thrust pattern which may result in dentitionbeing pushed forward. Dental malalignment caninterfere with labial closure and function. Brux-ism or teeth grinding is common among childrenwith significant oral sensory and cognitive needs.Some children with significant bruxism presentwith worn dentition, gum swelling or gingiva,and oral pain that may result in resistance to oralfeeding. For more information regarding dentalconcerns, please refer to the chapter on “▶DentalHygiene for Children with Cerebral Palsy”(Section 2: General Medical: Dental).
Lingual mobility at rest and in functional activ-ities provides information about the child’s abilityto manage secretions, foods, and liquids. Lingualprotrusion, retraction, spreading, narrowing, lat-eralization, and tipping and rolling the tonguebilaterally should be included in the examination,
and the child should be able to imitatively orvolitionally perform these tasks. In the absencevolitional performance of these movements, func-tional tongue mobility and movement patternsmay be described as they are displayed withinthe feeding observation and examination. In typ-ically developing children, lingual control of lat-eral movement and rotational patterns (tippingand rolling) of the tongue are preceded by thedevelopment and control of lateral and rotationalmovement patterns within the trunk. Many chil-dren with CP diagnosed with more severe move-ment dysfunction (GMFCS levels IV–V) displaymovement patterns that are dominated by symme-try in the upper and lower extremities, and theirtrunk movements may be limited to flexion andextension patterns. Most often these children willdisplay lingual mobility that mirrors the symmet-rical and midline movement patterns observed inthe trunk. The immature anterior-posterior sucklepatterns that dominate lingual movements in thesechildren are insufficient to manage moreadvanced food textures. In contrast, childrenwho present with greater trunk control and amore varied repertoire of movements throughoutthe body (GMFCS I–III), including control oflateral and rotational movements in the trunk andindependent sitting balance, tend to display agreater variety of lingual movement patterns forfeeding (Sullivan et al. 2000; Calis et al. 2008;Weir et al. 2013). They may also present withmore refined grading and control of oral muscu-lature during feeding, thus improving efficiency infeeding. Children with improved control of thetrunk mobility and greater experience with variedmovement typically present with better prognosisfor advancing texture, increasing volumes, andengaging in sufficient feeding to support theirnutritional, growth, and hydration needs (Brackettet al. 2006).
The hard palate and velum may be assessed forsize, shape, and function. The hard palate is exam-ined for structural integrity and any abnormalities,such as a cleft or abnormal shaping which maypotentially impact bolus collection, and controland transport during the oral phase of feeding.The appearance of a highly arched palate may bethe cause for concerns of palatal packing and
10 M. E. Gellert-Jones
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issues with mouth cleaning, particularly in thechild with limited lingual control and range. Like-wise, a flattened or wide palate presents withincreased area that may require lingual pumpingor lingual contact to sufficiently clean of foods.
Adequate velar length and rise are required tocreate sufficient intraoral pressure for bolus col-lection and transport. Adequate velar rise willensure that the bolus does not enter the nasophar-ynx as it passes into the pharyngeal vestibule.Children who present with velopharyngealincompetence often display sneezing during thecourse of the meal or have increased nasal secre-tions and possibly food or liquid draining from thenose. Velopharyngeal incompetence may alsoresult in difficulty achieving labial closure sec-ondary to increased nasal secretions. This limitsnasal breathing patterns and necessitates an openmouth posture for breathing. The posterior oralcavity should be examined to view tonsillar tissue.Persistent enlargement of tonsillar or adenoidaltissue may be related to gastrointestinal reflux(GER), infection, or allergies. The enlargementof tonsils and adenoids may impact the comfortof swallowing and ease of respiration and influ-ence the ability for the child to achieve adequatevelar rise. The chart below (Table 2) providessome commonly observed structural oral motorabnormalities, causes, associated issues, and thepotential impact that these impairments present onfunction for feeding.
Assessment of vocalization strength, control,quality, and cough may provide some ideas of thechild’s ability to protect the airway. If the childpresents with a weak voice, is continuouslyhoarse, or is aphonic, then a full examination ofvocal fold function may be warranted. The vocalfold function is a mechanism for the protection ofthe airway. The closure of the vocal folds is essen-tial for the development of the increased sub-glottal pressure needed for productive coughingand voicing. Focusing on the development of aneffective cough or vocalization upon imitation orinstruction for the child with secretion manage-ment and feeding concerns is a worthwhile goal.Children with reliable and effective strength incoughing or vocalizations can recruit such skillsas a compensation to manage secretions, foods, or
liquids that have pooled or penetrated the laryn-geal vestibule.
The assessment of the structures related tomotor output and sensory responses involve theassessment and understanding of cranial nervefunction (Sheppard 1995; Andrew et al. 2012).Neuromuscular impairments may impact cranialnerves. The chart below (Table 3) describes thecranial nerves’ influence on the sensory and motoraspects of feeding and swallowing. There areadditional cranial nerves that impact vision andsmell, and these may impact feeding function andmealtime interactions and enjoyment.
Feeding Observation
The feeding observation provides an opportunityto view both the child and the caregiver engagedin the functional activity of feeding (Morris andKlein 2000). If the observation is not taking placein the home, or in a location of familiarity,responses may be atypical and not representativeof everyday mealtime experiences within thehome. The seating for the feeding observationshould match the system that is used in thehome. If the child’s positioning equipment forfeeding is not available, a detailed description,photo, or video of the child in the seating systemduring feeding is helpful to understand the impactit may have on feeding. Attention to the care-giver’s ability to utilize equipment to promotesafe positioning and the overall condition and fitof the positioning equipment is appropriate andshould include an assessment of the use of straps,trays, and supports within the seating system.Customization of seating systems may be a sig-nificant need to address the child’s individualpostural and positioning needs. A physical thera-pist may be instrumental in making effective indi-vidualized adjustments that provide improvedpositioning for the child. Often children will bereclined or tilted within their seating system inpreparation for feeding to assist in decreasingbolus spillage. However, the impact of gravityon the flow of the bolus and the ability to whichthe child may actively participate in feeding maymake positioning with varying degrees of tilt or
Assessment and Treatment of Feeding in Children and Youth with Cerebral Palsy 11
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Table
2Com
mon
lyob
served
structuraloralmotor
abno
rmalities,causes,associated
issues,and
thepo
tentialimpacton
thefunctio
nforfeeding
Structuresandcommon
presentatio
nCausesand/or
relatedissues
Potentialimpacton
functio
n
Headshap
e•Asymmetry
•Plagiocephaly
Structuralabn
ormalities
Immob
ility
Impactof
gravity
onstructures
Persistentreclin
edor
recumbent
positio
ning
Pelvicandtrun
kasym
metry
"asymmetry
oforal-facialstructures
#fun
ctionof
oral-facialstructures
Lips •Labialasymmetry
•Upp
erlip
retractio
n•Openmou
thpo
sture
•Swellin
gor
abrasion
son
thelip
s•Labialfasciculatio
ns
Structuralabn
ormalities
Poo
ralignm
ento
fthepelvisandtrun
kAsymmetries
ofhead
andoral-facialstructures
Hyp
oton
icoral-facialton
eHyp
ertonicoral-facialton
eDecreased
sensoryaw
areness
Inability
tobreathethroug
htheno
seEnlargedtonsillar/adeno
idaltissue
Allergies/cold
orrespiratoryissues
Lip
bitin
gBreak
downandchappedlip
s
#managem
ento
fsecretions,foo
ds,and
liquids
#abilityto
createoralclosureto
engage
inefficientb
olus
collection,
control,manipulation,
andtransport
#con
tainmento
fsaliv
a/droo
ling
Droolingim
pactinghy
dration,
hygiene,andsocialinteraction
#abilitytoparticipateinfeedinginpu
blicor
setting
sou
tsidetheho
me
#abilityto
approx
imatethelip
sor
achieveclosureto
efficiently
use
cups/straw
s/utensils
#abilityto
self-feed
#abilityto
manageavarietyof
textures
#ind
ependencein
feeding
Dentition
•Malocclusions
•Dentalcaries
•Dentald
ecay
•Missing
teeth
•Bruxism
Structuralabn
ormalities
indentition
erup
tion
Lingu
alpatterns
Infected,infl
amed,o
rirritatedging
iva
Macroglossia
Poo
roralhy
giene
Lim
itedlin
gualmob
ility
formou
thcleaning
Gastroesoph
agealreflux
Frequ
entv
omiting
Medications
thatim
pactdentition
Sensory
issues
contribu
tingto
brux
ism
ormakingoralhy
gienechalleng
ing
Microgn
athia
Palatalshape
Asymmetry
ofthepelvis,trunk
,head,
andoral-facialstructures
Impactability
toachievelabialclosure
#abilityto
approx
imatedentition
forchew
ingandfood
managem
ent
Oralp
ain
"in
bacteriain
oralsecretions
"risk
ofaspiratio
npn
eumon
iaRefusalto
feed
Refusalto
engage
intoothbrushing
Sensitiv
ityto
temperature,texture,o
rsugarcontentinfood
sSwallowingfood
swho
le#
textureadvancem
ent
#oralintake
Ton
icbite/biting
toim
prov
estability
Ton
gue
•Lim
itedtong
uerang
e•Poo
rlygraded
tong
uemov
ements
•Decreased
tong
uemob
ility
Structuralabn
ormalities
Persistence
ofim
maturesucklepattern
Midlin
etong
uemov
ements
Decreased
dissociatio
nof
tong
ueandjawmov
ements
Decreased
varietyof
lingu
almov
ement(lateral,tip
ping
androlling
oftong
ue,
tong
ueelevation,
lingu
alprotrusion
)
#mou
thcleaning
#abilityto
cleanfood
sfrom
lipsor
dentition
Packing
offood
sin
thecheeks,u
nder
thetong
ue,o
rin
thepalate
#abilityto
advancetexture
#abilityto
accept,collect,m
anipulate,andtransportb
olus
#con
trol
ofsecretions,salivaor
food
s
12 M. E. Gellert-Jones
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•Abrasions
ofthe
tong
ue•Lingu
alfasciculations
Decreased
repertoire
oflin
gualshaping(narrowing,
spreading,
cupp
ing,
posteriorlin
gualcontrol)
Asymmetry
ofthepelvis,trunk
,head,
andoral-facialstructures
Decreased
posturalstability
orcontrol
Poo
rpo
sitio
ning
ofthepelvis,trunk
,head,
andneck
structures
Hyp
o-or
hyperton
icity
inthetong
ueLim
itedvariations
inlateral,rotatio
nal,andgraded
mov
ementsof
trun
kSensory
issues
andaw
areness
Biting
thetong
uePersistentp
resentationof
food
satmidlin
e
Swallowingfood
swho
leOralstasis
Exp
ellin
gfood
sandliq
uids
#intraoralpressure
Prematurespillageof
food
sov
erthebase
ofthetong
ueUse
ofhead
positio
nandmov
ementsto
mov
efood
andliq
uids
inthe
oralcavity
Drooling
#efficiency
infeeding
Fatigue
andleng
thymealtimes
#abilityto
feed
outsidetheho
me
Hardpalate
•Higharch
•Asymmetry
•Flattened
•Abrasions
Oral-facialweakn
ess
Con
genitalabn
ormalities
Structuralabn
ormalities
Stron
gpersistent
sucklepattern
Lim
itedsuckingandfeedingskills
Poo
rpo
sitio
ning
ofthepelvis,trunk
,head,
andneck
structures
Dentitionalignm
entand
developm
ent
Microgn
athia
Ineffectivechew
ingskills
Poo
roralhy
giene
Palatalpackingof
food
s#m
outh
cleaning
Inefficiency
inbo
luscollection,
control,managem
ent,andtransport
Oralp
ainor
pain
with
feeding
Fatigue
during
mealtimes
Velum
•Velop
haryng
eal
incompetence
Poo
ror
absent
velarrise
Enlargedtonsillar
andadenoidaltissue
Increasedpressure
attheup
peresop
hagealsphincter
Gastroesoph
agealreflux
Structuralabn
ormalities
Nasop
haryng
ealreflux
Foo
dandsecretions
comingfrom
theno
seSneezing
Inability
toengage
innasalb
reathing
Inefficiency
inbo
luscollection,
control,managem
ent,andtransport
Painwhensw
allowing
Issues
incontrolling
,swallowing,
andrespiration
Increasedsw
ellin
gandirritatio
nof
nasaltissue
#desireto
eat
Assessment and Treatment of Feeding in Children and Youth with Cerebral Palsy 13
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recline extremely challenging for children withoral motor needs (Woods 1995; Marques and Sá2016). It is essential to match the degree of posi-tional and postural support the child requiresacross all environments. Considerations aboutthe efficiency and safety of feeding may be appro-priate to discuss, if children are feeding while onthe caregiver’s lap. A review of all positioningequipment that is in use for feeding across variousenvironments may enlighten the team about theseating used in the home versus what is availablefor them to use at school or out in the community.Controlling this variable in the child’s care mayserve to improve consistency and function acrosssettings.
Feeding observations provide opportunities toview oral skills, coordination of respiration, bolus
collection, transport, and swallowing. The child’sability to manage and accept foods or liquids andto identify which foods or liquids may be morechallenging will help define concerns. Explora-tion of observed and reported food preferencesmay be present secondary to multiple issues.Food preferences related to undiagnosed foodintolerances or allergies are most concerningwhen identifying related medical issues. Somechildren present with additional diagnoses thatinfluence the child’s ability to engage in the flex-ible acceptance of a variety of foods (i.e., autismspectrum disorders). The sensory properties ofpreferred foods (i.e., highly seasoned or bland,cold or warmer, pureed or solids, thicker or thin-ner) may help to identify consistent patterns ofacceptance. Consistent sensory properties of
Table 3 Cranial nerves’ influence on the sensory and motor aspects of feeding and swallowing (Costa 2018; CranialNerves with a Focus on Swallowing and Voice 2019)
Cranial nerve Vtrigeminal
Sensory: Information about pain, temperature, touch, and proprioception from the face,cheeks, lips, jaw, as well as the jaw and temporal-mandibular joint, and deep structures ofthe face, palate, tongue, and pharynxSensory: Feedback regarding the size, shape, and texture of foods in the mouthMotor: Jaw control, jaw opening, closing, chewing, jaw lateralization, rotational patternsAssists in superior-anterior laryngeal rise, tongue retraction, posterior approximation ofthe tongue to soft palate, velar rise, and posterior pharyngeal wall constriction
Cranial nerve VII facial Facial expressions, cheek movementsTasteLip mobility, control, and strengthSalivation (submandibular and sublingual glands)Lower jaw depressionAssists with hyoid elevation
Cranial nerve IXglossopharyngeal
Motor: Elevation of the larynx and pharynx and widening of the pharyngeal wall mobility;contributes to epiglottic movement and inversionSensory: Taste and sensory information to the posterior 1/3 of the tongue, sensation to thetonsils, soft palate, and upper pharynxSensory information for pharyngeal gag and coughSalivation (parotid gland)
Cranial nerve X vagus Motor: Elevation and depression of the velum, elevation of posterior portions of thetongue, elevation and closure of the larynx/vocal folds, lowering of the larynx afterswallow muscles of intrinsic larynx, and activation of the cricopharyngeal muscle (upperesophageal sphincter – UES)Influences: Swallowing function and coordination, voicing, resonance, movement of thepharynx (pharyngeal contraction), relaxation of cricopharyngeal muscle, esophagealperistalsis, cardiac issues, GI tract, respirationSensory: Feedback to the palate, pharynx, larynx, trachea, lungs, and epiglottisTaste receptors in posterior oral cavityRecurrent laryngeal nerve (RLN): Sensation of aspiration below vocal foldsSuperior laryngeal nerve (SLN): Posterior tongue and larynx for bolus control andpenetration into laryngeal vestibule
Cranial nerve XIIhypoglossal
All intrinsic musculature in the tongueCupping, spreading, shortening, narrowing, and flattening of the tongue
14 M. E. Gellert-Jones
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preferred foods may be related to the physical andsensory properties of food texture, or they may bemore related to the child’s oral motor abilities tomanage those textures (Morris and Klein 2000).The condition of the teeth may result in sensitivityto temperatures of foods. Ability to process thesmell or taste of foods may create additional sen-sory challenges for some children. The caregivermay provide additional information about thedevelopment of preferences and food selectivity.Food preferences also may be related to cultural orcustomary foods for the family.
Utensils that are typically used and familiar toboth the child and the feeder should be examinedby the clinician along with the techniques to feedthe child at home with these utensils. The abilitywith which the feeder and the child can success-fully and efficiently use utensils from home willprovide information regarding the match of theutensil (spoons, forks, bowls, plates, and cups) tothe oral motor and developmental needs of thechild (Morris and Klein 2000; Marques and Sá2016). The appropriate utensil width for thechild’s mouth and the shape and depth of thespoon bowl influence the child’s ability to cleanthe spoon. If there is insufficient upper lip activa-tion, there may be inadequate contact to clean thespoon, and the child may fatigue or need morespoon presentations, which in turn may lengthenmealtimes. Longer mealtimes may result in amore significant expenditure of energy to com-plete the meal. Additionally, if the child is inef-fective in cleaning the spoon, the feeder maylikely increase the bolus size to compensate forpoor contact with the spoon which may lead to thepresentation of a bolus that is too large for thechild to manage safely. The safety and use ofutensils and the child’s response to utensils canprovide valuable information in the developmentof an effective feeding plan.
Requesting that the caregiver provide foods forthe assessment will allow options that are familiarto both the child and feeder. Foods that the care-giver would like the child to be able to eat or“goal” foods may give some insight about thegoals of the caregiver and their understanding ofthe child’s current and potential feeding abilitiesand needs. When the caregiver supplies food,
expectations of accepted food textures, food pref-erences, and typical volume that the child is toconsume may be revealed. Presenting a trial usingnew foods and textures during the assessmentallows the clinician to view the child’s ability inmanaging textures that may not typically be eaten,such as dissolvable solids or thickened liquids.
A detailed description of the feeding observa-tion includes the functional use of oral-facialstructures to engage in feeding. The ability toaccept the food; manipulate the bolus within theoral cavity; use the lips, tongue, cheeks, and teethin a coordinated manner to manage the foods; andtransport the foods for swallowing are all neces-sary components. Feeding and swallowing shouldbe well-coordinated with respirations. The num-ber of swallows the child requires to clear certainfoods and liquids from their mouth is a clearindicator of efficiency with those foods. The eval-uation may include descriptions of any evidenceof gastrointestinal dysfunction surrounding feed-ing. Children with gastrointestinal concerns maygag, vomit, cry, indicate there is pain with feeding,or display arching during meals. Effortful swal-lows and burping can also be a symptom of gas-trointestinal issues. If there is frequent coughing,wet vocal quality, or evidence of declining respi-ratory status, the foods with which this occurs andthe point during the observation when these issuesarise may be important indicators of sustainableand safe oral feeding. For more information ongastrointestinal issues, please refer to the chapteron “▶Gastroesophageal Reflux in Children withCerebral Palsy.” (See section 2: General Medical:Gastro-Intestinal.)
Caregiver responses to the child’s difficultiessuch as the use of pacing of the food presentation,bolus size, and placement of foods as well as anysupport provided by the feeder (i.e., cheek sup-port, verbal cues, reinforcement) should bedescribed. The inclusion of any observations, ver-balizing of stressors, or mealtime concerns on thepart of the caregiver is essential. As the observa-tion progresses, examiners may want to confirmthat the feeding is representative of mealtime pre-sentations in the home. Understanding whatoccurs during a “typical” mealtime for the childmay provide insight into many issues surrounding
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feeding (Wilson and Hustad 2009). The mealtimeroutine, schedule, expected volumes, and loca-tions of the meals all may be factors that caninfluence intake, comfort, and safety of feedingfor the child with neuromuscular impairments. Itis appropriate to include as much detail as possibleregarding the observation.
Communication between the child and care-giver may decrease or become disrupted whenfeeding the child with significant difficulties.Interactions and cues provided by both the feederand the child may reveal difficulties with the psy-chosocial aspects of feeding (Harding andCockerill 2014). Refusals or negative disruptions(crying, gagging, pushing away, hitting, yelling)are common learned behaviors that may be anoutgrowth of difficulties feeding. These behaviorsoften are a response to requests for acceptance offoods that are challenging for the child secondaryto medical or physical issues. Describing any dis-ruptions that occur within the meal, foods/liquidsthat cause the disruption, or the point in the mealat which the disruption occurs can be valuable indetermining issues related to acceptance. Any sig-nals that may precede disruptions or triggerrefusals (coughing, choking, hard swallows) con-tribute to the understanding of causes related tonegative disruptions. The management of refusalsor negative disruptions and understanding what iscommon to the feeding and what is unique to aspecific meal, food, or environment is helpful. Ifthe mealtime observation is atypical, it would beadvantageous to understand the ways in which itdiffers fromwhat usually occurs. Fatigue, discom-fort, upset, and anger of the child and/or caregiverare all apparent symptoms of feeding dysfunction.The feeding observation can provide the examinerwith valuable evidence upon which to basetreatment.
Self-Feeding
Some children are able to self-feed all or portionsof a meal. The mealtime setup, the foods the childis able to self-feed (i.e., only finger foods, drink-ing independently), how utensils are utilized andadapted for use, and the efficiency or labor-
intensive aspects of self-feeding for the child areall appropriate details to include in your examina-tion and evaluation on feeding abilities and needs.During a feeding treatment, if a child is a compe-tent self-feeder and refuses foods and that is aconcern, then there may need to be a discussionand change in the child’s autonomy in foodchoice. A child’s refusal may require a change infood texture to foods that are less likely to beexpelled. For additional information on self-feeding, please refer to the chapter on “▶Activi-ties of Daily Living Supports for Persons withCerebral Palsy.” (See section 4: Therapy Manage-ment: Adaptive Technology and Supports.)
Trial Therapy
Providing an opportunity to engage in trial ther-apy can be an important element in the assessmentprocess. It will provide the examiner with infor-mation regarding the child’s ability to process andrespond to changes and treatment. When effectivethe examiner’s approaches in trial interventionswill provide a model for the caregiver to observethe impact of intervention and potential forimprovement. For example, changes in position-ing can improve trunk alignment and allow thechild to function more efficiently during meal-times. Providing manual support to assist withhead position and labial closure can promoteimprovement in bolus control, management, andtransport. When caregivers view these interven-tions, it may facilitate discussion of shared goalsand allow for improved problem-solving togetheras a team. Such interactions may also lay thegroundwork for caregiver training. Follow-through with recommendations is positivelyimpacted when there is a positive relationshipbetween caregiver and the rest of the treatmentteam. Carryover and training are also improved byinvolvement in the treatment process.
Cervical Auscultation
Cervical auscultation is an additional tool that canbe utilized during the clinical exam to assess
16 M. E. Gellert-Jones
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swallowing efficiency and respiratory coordina-tion with the swallow (Morris and Klein 2000).By placing the stethoscope laterally to the tracheaand superior of the cricoid cartilage, the clinicianwill be able to assess auditory sounds ofswallowing. Initial assessment of the respiratorypatterns utilized in the management of oral secre-tions will provide some information in advance ofpresenting a bolus (Mills 2004). If breath soundsare clear and coordinated when managing secre-tions, then a liquid or pureed bolus may be pre-sented. Listening for evidence of prematurespillage of the bolus over the base of the tongue,or delayed initiation of the swallow, or other indi-cators of aspiration or penetration of the bolusduring the swallow may be beneficial. Changesin respiratory sounds following the swallow areessential to note. A study by Frakking et al. (2016)revealed that under cervical auscultation, the pres-ence of wet respiratory quality and wheezing inthe absence of a glottal release sound (GRS) fol-lowing the swallow was highly correlated withaspiration. Clearing of wet vocal quality follow-ing a cough may assist in training compensatorycough techniques to assist in improvingswallowing safety.
Instrumental AssessmentsVideo-fluoroscopic swallow study (VFSS) andfiber-optic endoscopic evaluation of the swallow(FEES) are commonly performed to assess thestructures of feeding and swallowing when thereis a suspicion of aspiration or structural abnormal-ities that impact upon safe swallowing. Silentaspiration occurs when there is no cough inresponse to material entering laryngeal vestibule,traveling past the vocal folds, and into the lungs.The VFSS or FEES studies are not considered tobe “pass” or “fail” studies; instead, they aredescriptive and are utilized to view the functionof the structures of feeding and swallowing in theaction of a simulated meal. It is important that thecaregiver comprehend the goal of performing aninstrumental study, as it often increases stress andfear that their child will “fail” and no longer beable to engage in oral feeding experiences. Bothstudies also represent a brief sample of the child’sswallowing function in a situation that is outside
of their typical meal. The best use of these studieswill be to use them as tools to inform and directthe course of ongoing treatment. FEES and VFSSare viewed as complementary and are not viewedas mutually exclusive in their use for diagnosticpurposes (Arvedson 2013).
If primary concerns surround laryngeal func-tion and what occurs before and just after thepharyngeal swallow (Arvedson 2013; Dodrilland Gosa 2015), then FEESmay be an appropriatestudy. FEES is appropriate for viewing upper air-way function, vocal fold movement, and identify-ing the presence of pharyngeal residue after theswallow (Arvedson 2013). FEES may beperformed at the bedside, or in an office visit,and it does not involve exposure to radiation.The invasive nature of placing the fiber-opticscope may create some tolerance issues, espe-cially for those children with cognitive and neu-romuscular challenges (Morris and Klein 2000). Ifa more complete view of pharyngeal structuresand function is needed, the VFSS will be a morepractical assessment.
The VFSS allows a view of the dynamic func-tion of all the oral, and pharyngeal structures, andupper esophageal function. Viewing full esopha-geal function is not always possible. Barium ismixed in a variety of consistencies of familiarfoods and fed to mimic more typical feeding sce-narios. The VFSS is not without challenges, espe-cially when performing with children who havesignificant positioning needs. Optimal positioningfor children with significant motor disturbancesmay be challenging to achieve with availableVFSS positioning chairs. Alternative methods ofobtaining appropriate postural alignment outsideof the child’s wheelchair, such as the use of addi-tional straps, pool noodles, and towel rolls, maybe helpful in preparation for any seating limita-tions that may arise when conducting the study.
Concerns related to the comfort of the childand their caregiver may heighten stress andimpact the ability to complete an instrumentalassessment. Instructing the parent and the child,in all aspects and details (what, why, where, when,and how) of the study, may ease stress. A hypoth-esis or diagnosis on the presence of oropharyngealdysfunction will inform decision-making
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regarding the type of study and the use of varioustextures and positioning equipment beforeconducting the study. Considerations of the timeinvolved in a VFSS are important because ofradiation exposure during a VFSS, further pro-moting the development of a hypothesis, so thatthe study will result in obtaining valuable infor-mation to support the development of goals andfeeding plans.
It is appropriate to work with children prior toinstrumental assessments to prepare them foractive participation in such assessments. Whenclinicians are able to work with the child prior tothe instrumental assessments, it may help them tobetter understand the process and may also allowthe clinician to identify compensatory techniques(cough or vocalization after the swallow, changesin head positioning, temperature, or texture) thatmay promote improved performance whenimplemented within the study. The clinician’srole in selecting appropriate and reliable compen-satory techniques may ensure that the informationgained though the study is optimized and willprovide insight into the value of using appropriateintervention strategies in treatment.
Changing head and neck positions (chin tuck,turning to one side) may promote optimal align-ment for effective swallowing. Temperature(warm, cold, or alternating between temperatures)or intense flavors (lemon, sour, salty) to heightensensory input or influence motor responses duringswallowing may be beneficial. Some children canemploy vocalizations or cough either on com-mand or imitatively to help clear pooled materialduring a VFSS. Manipulating the presentation ofthe food by using pacing, altering bolus size, ortexture modifications are common interventionstrategies employed within FEES and VFSS.Issues surrounding aspiration that may be due tofeeding fatigue may be “teased out” through mak-ing alterations in the progression of the study.Performance on VFSS and FEES are not alwaysan indicator of complete safety or dysfunction.The results inform the team and caregivers ofguidelines that provide the best opportunity forsafety. These guidelines may or may not include arecommendation of appropriate consistencies,
limitations on volumes, or limitations on howoften the child may engage in oral feeding.
Instrumental assessment often results in rec-ommendations that may include altering food tex-tures. Using the standards and consistenciesoutlined within the International Dysphagia DietStandards Initiative (IDDSI) to describe food tex-tures will provide a more detailed understandingof each texture and liquid viscosity. When consis-tent use of appropriate food textures and liquids isimplemented across environments, it decreasesvariabilities related to the textures that the childmust manage when consuming foods in differentplaces. The IDDSI guidelines present specificexamples and measures to gauge the textures ofall foods and liquids so uniformity of texture maybe achieved. Measurements of liquids and foodtextures can be cumbersome to perform, and theuse of the IDDSI will assure that reliable food andliquid consistencies are presented at home, intreatment, and across all settings in which thechild is functioning (Steele et al. 2014).
Even when a child presents with significantevidence of aspiration on a study, it is importantthat the child continues to engage in opportunitiesto practice swallowing so they can maintainstrength and coordination for swallowing secre-tions. Children who are unable to maintain safeoral feeding of sufficient volumes to support nutri-tion and hydration needs benefit from an oralhygiene program and opportunities to focus onswallowing secretions (Arvedson 2013). Continu-ing to experience tastes and mealtime activitiesthrough limited volumes and the presentation ofdipped spoons may accompany recommendationsfor the initiation of supplemental tube feedings(Arvedson 2013).
Upon the completion of a full assessment, theEating and Drinking Abilities Classification Scale(EDACS) may be utilized to help describe thedegree of the swallowing dysfunction. TheEDACS provides a clear model for individualswith CP, their families, and health professionalsto use as in defining the abilities of the child andthe associated feeding impairments (Sellers et al.2013). The EDACS also may allow caregivers toview the feeding skills exhibited by their child inrelation to the full continuum of abilities, thus
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aiding in the understanding the child’s feedingabilities (Fig. 4).
To summarize the feeding assessment (exami-nation and evaluation) in children with CP, let’sreturn to the ICF model. The ICF model repre-sents the interactive nature among personaldimensions (body function and structure impair-ments, activity limitations, and participationrestrictions) and the contextual factors (environ-mental and personal) that may be impacted by aspecific health condition (in our case, CP)(Mahant et al. 2018). Figure 5 illustrates the ICFmodel inclusive of specific items that have beendiscussed and should be considered in the com-prehensive feeding assessment. Assessment find-ings will inform the development of a holistic,comprehensive treatment plan.
Intervention
The treatment needs of the child with CP aresignificant in terms of the scope of services thatmay be engaged to meet the health concerns andfunction of the child and family (Morris and Klein2000; Arvedson 2008). Utilizing an interdisciplin-ary model has proven to be an effective format toaddress the feeding needs of medically complexchildren with neurological impairments(Sheppard 1995; Arvedson 2008). Roche et al.(2011) determined that the interrelationshipsbetween the various medical, oral, motor, sensory,behavioral, and psychosocial factors that influ-ence feeding require an interdisciplinary team.This team is not one that merely observes thecare provided by other team members; rather it isa team that is interactive in creating and sharinginformation to design and implement a care planfor the child and family. An interdisciplinaryapproach allows the entire team to participate in
Fig. 4 EDACS Clinical Algorithm. (Reproduced by permission, D. Sellers)
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the development of goals that mutually serve thechild and the family. An interdisciplinary teammay consist of any and all of the followingmembers.
Caregivers and the Child
The role of the caregiver is crucial to creating atreatment plan with shared goals that have beendeveloped based on a comprehensive assessment.They are the experts in the care of their child. Insome cases, the child can make decisions regard-ing their eating and food choices. Some olderchildren who present with endurance and fatigueissues may choose to expend their limited energyon communication, interactions with peers, ormobility. They may view oral feeding as an activ-ity that is too labor-intensive to result in enjoyablemealtimes. In cases like this, the child may self-
advocate for supplemental feedings and enjoytastes of foods orally when the opportunity arises.
Physicians, Dentists, and PhysicianAssistants
Depending upon the child’s needs, specific med-ical professionals can function on the team tovarying degrees. Children who present withmore significant medical complexities may needadditional support to coordinate medical and otherteam members. Medical professionals mayinclude physicians from the following disciplines,developmental medicine, pediatrics, gastroenter-ology, otorhinolaryngology, pulmonology, cardi-ology neurology, orthopedics, and radiology, aswell as physician assistants, orthodontists, oralmaxillary surgeons, and dentists.
ParticipationAdaptation of the environment for child to participate with family, friends and classmates in -Daily Meal & Snack Times-Celebrations & Socialization-Peer Interactions-Participation in EducationalActivities in School & Community Activities Outside of the Home
Personal FactorsFamilial Stressors & AttitudesFood & Feeder PreferencesBehavioral ConcernsCultural Factors and Family CustomsFinancial NeedsAbility to Attend School (Willingness & Training of Feeders)Food Preparation & Texture Modifications for Individual Needs
Health Condition - CP
Body Function & StructureTonal Abnormalities (Strength, Control, & Endurance)Positioning & Alignment ChallengesCardiac DefectsDysphagiaRespiratory ConcernsCongenital Abnormalities (Syndromes)Neurological Concerns (Seizure disorder, ASD, etc.)Secretion Management & DroolingGastro-Intestinal Concerns (GER, Constipation, etc.)Food Intolerances & AllergiesNutrition, Hydration & Growth ChallengesCognitive StatusSensory NeedsImpact of Illness and HospitalizationOther Medical Issues
Activity Child’s functional motor ability in feeding/eating tasks
Environmental FactorsAppropriate Seating/Positioning Availability
Safety Across Environments When Feeding Adequate Time Allowance to FeedAppropriate Utensils AvailabilityAppropriate Supports Available for Feeding NeedsAvailability & Access to Appropriate & Affordable Foods
Contextual Factors
Fig. 5 IFC framework applied to a comprehensive feeding assessment
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Psychologist
Most children with significant feeding concernspresent with some learned behaviors that createbarriers to successful feeding. Providing the childwith opportunities to engage in positive practicethroughout treatment serves to reinforce feedingas a positive and enjoyable experience (Manno etal. 2005). The psychologist may develop a plan toaddress the negative learned behaviors that oftenare an outgrowth of feeding difficulties.
Dietitian
The dietitian plays a vital role in helping to man-age the caloric intake and hydration and willdetermine the volume and types of foods andfluids required to promote growth and weightgain of the child (Morris and Klein 2000).
Speech and Language Pathologist(SLP)
There may be more than one speech and languagepathologist involved in the care and treatment ofthe child with feeding dysfunction. They mayfunction in a variety of capacities depending onthe setting in which they work (medical, private,early intervention, school or community-basedsettings). The SLP is essential to the team forassessment and the development of oral motortreatment plans. They also may implement thera-peutic feeding allowing for positive oral feedingexperiences for children with significantswallowing needs. Focus on parental trainingand promoting carryover across environmentsare goals of treatment (Arvedson 2008). Formore information on the role of the SLP in man-aging the child with CP, please refer to the chapteron “▶ Speech, Language, and Hearing PracticeElements in the Management of the Child withCerebral Palsy” (see section 4: Therapy Manage-ment: Introduction).
Occupational Therapist (OT)
The role of the occupational therapist may be toprovide services that address the oral, sensory, andmotor needs of the child with feeding needs.Depending upon the structure of the program,the occupational therapist may be more signifi-cantly involved in the treatment of oral motorneeds and the assessment of feeding via VFSS.The OT is also instrumental in the adaptation ofutensils, trays, and seating and in implementingassistive technology (such as electronic self-feeders) to promote independence in self-feedingand hydration across settings. They may functionin a variety of capacities depending upon theenvironment in which they work (medical, pri-vate, early intervention, school or community-based settings) (Manno et al. 2005). For moreinformation on the role of the OT in managingchildren with CP, please refer to the chapter on“▶Occupational Therapy Elements in the Man-agement of Children with Cerebral Palsy.” (Seesection 4: Therapy Management: Introduction.)
Physical Therapist (PT)
The PT plays an essential role in the assessment oftone and motor functioning, as well as adaptingand adjusting seating to match the postural needsof the child with CP during feeding. Additionally,they can provide support to the team in the man-agement of trunk mobility and improvement ofrespiratory activation of the ribcage to address thestrength and effectiveness of cough and improve-ment of secretion management. They may func-tion in a variety of capacities depending upon thesetting in which they work (medical, private, earlyintervention, school or community-based set-tings) (Woods 1995; Manno et al. 2005).
Social Worker
The social worker’s role is multifaceted through-out feeding assessment and treatment. Familieswho include children with significant feedingneeds are prone to stressors and may require
Assessment and Treatment of Feeding in Children and Youth with Cerebral Palsy 21
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assistance in managing the demands and issuesinvolved in a feeding treatment program. The roleof the social worker as a case manager, liaison,and support for the family is indispensable to theteam. They may function in a variety of capacitiesdepending upon the setting in which they work(medical, private, early intervention, school orcommunity-based settings) (Morris and Klein2000; Sheppard 1995).
Educational/Support Staff
The inclusion of educational and support staffwithin the home or the academic setting will pro-mote the carryover of treatment goals and careconcepts across environments. It is vital for allteam members to be able to interact to addresstreatment interventions and goals for the feedingprogram. Teams that share goals and work acrossenvironments will be more efficient and effectivein achieving treatment outcomes (Arvedson 2008;Morris and Klein 2000).
Elements of TreatmentTreatment begins with the development of andprioritization of shared goals (Mahant et al.2018). The family and the child must have aprimary role in making decisions about interven-tions. It is essential to recognize that caregiversare the experts when it comes to determininginterventions and goals to promote feeding abili-ties in their children with CP (Cowpe et al. 2014).Approaching treatment without addressing care-givers’ concerns or gaining their investment in theprocess will drastically limit the ability for thechild to succeed in any form of treatment, feeding,or otherwise. Much of the team focus centers onfamily training. The more the caregiver isinvolved and understands about their child’sneeds, the more active they become in the sharedgoals and carryover of treatment strategies. Onestudy by Hettiarachchi and Kitnasamy (2013)examined the role of caregivers in treatment andfound that the use of experiential activities infeeding training and therapy promoted carryoverand involvement of caregivers. It is essential torecognize that the caregivers are the “keepers” of
their child’s medical and feeding histories and areprimarily responsible for implementing their careregimens. When the caregiver is the sole providerand “keeper” of the child’s care, this may imposelimitations upon the variety of environments inwhich the child may function. Limitations of thechild’s environments serve to decrease the expe-riences in which the child may participate. It alsolimits the independence of both the child andcaregiver and potentially may decrease the qualityof life for both individuals. The burden of dailycare regimens that are well understood and prac-ticed may be challenging for the caregiver and thechild to share across environments. This can beparticularly difficult to accept if certain care prac-tices have become inefficient or a determinationhas been made that such routines no longer meetthe child’s needs. Training plans that provideexperiential activities such as modeling andrehearsal of feeding protocols show greater adher-ence and improved consistency compared to thosewhich include only verbal and written instruction(Mueller et al. 2003). Implementing experientialfeeding activities that engage the caregiver inpositioning themselves in ways that mimic thetone and posture their child displays can be ahelpful tool. It may allow the caregiver to experi-ence the full impact positioning and motor dys-function on feeding, swallowing respiration, andendurance for safe and efficient mealtimes. Thereshould be an expectation that these types of train-ing efforts will be a significant portion of effectivedysphagia treatment plans (Harding and Halai2009).
Medical needs present as the most pressingissue when initiating a therapeutic feeding plan.Ruling out medical issues that may impact feedingshould be a goal in the medical clinic to inform thetreatment plan. (Arvedson 2013; Sheppard 1995).Ongoing assessment of interventions and theimpact of treatments on a child’s medical condi-tion is crucial throughout the treatment process(Morris and Klein 2000). Once the child isdeemed medically stable, the treatment processmay be implemented. Figure 6 illustrates the pedi-atric feeding care cycle with four major compo-nents: assessment and reassessment, diagnosisand goal setting, intervention, and monitoring
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and evaluation. Effective therapeutic feedingplans/programs for children with CP require acyclical, dynamic process and collaborativeefforts as indicated in this model from the Officeof Kids and Families in Sydney, Australia (Feed-ing Difficulties in Children, A Guide for AlliedHealth Professionals). Children, regardless oftheir diagnoses, do not function as static beings,free from stressors, influences, growth, change,and issues that potentially may compound thepresentation of their medical and feeding needs.