dysphagia Los escolares con disfagia asociada a condiciones médicas complejas

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LSHSS

Clinical Forum

Schoolchildren With DysphagiaAssociated With Medically

Complex Conditions

Maureen A. Lefton-Greif Eudowood Division of Pediatric Respiratory Sciences at Johns Hopkins Medical Institutions, Baltimore, MD

Joan C. ArvedsonChildren’s Hospital of Wisconsin–Milwaukee Medical College of Wisconsin–Milwaukee

S chool-based speech-language pathologists (SLPs)

are increasingly facing the need to be knowledgeable

about swallowing and feeding problems in children.

Improved survival of preterm infants with very low birthweight,infants with major cardiorespiratory conditions, and children with

neurological insults has resulted in more children with medically

complex conditions who have swallowing and feeding problems

in the schools. These children vary in their manifestations of

swallowing deficits and more generic feeding difficulties such as

behavior-based feeding problems, “ picky” eating in the presence

of adequate skills, and delayed development of oral skills without

true swallowing deficits. Essential activities of daily living for all

children include safe swallowing and functional skills for oral

feeding.

According to the American Speech-Language-Hearing Associ-

ation (ASHA) Guidelines for the Roles and Responsibilities of

the School-Based Speech-Language Pathologist (ASHA, 2000,

p. 281), interventions for swallowing and feeding problems may be integrated with interventions that contribute to effective com-

munication. In addition, all children deserve adequate nutrition

and nonstressful mealtimes in order to have sufficient energy to

focus in ways that can maximize their learning and participation

in educational settings. These children are less likely than they were

in the past to be in self-contained special education classrooms or

special schools. The mandate to provide the least restrictive en-

vironment for all children in integrated programs has added to

the roles that SLPs are expected to perform in schools. Thus, all

school-based SLPs need to be prepared to carry out evaluations and

ABSTRACT: Purpose: This article reviews population trends

and general characteristics of children with dysphagia in schools,provides an overview of dysphagia teams and the roles of the

speech-language pathologist (SLP) in school and hospital settings,

and describes assessment and treatment of swallowing and

feeding problems in children with complex medical histories.

Method: A review of the literature of swallowing and feeding

problems in young children and population trends for children

who are at risk for dysphagia was completed. Two case studies

are presented to illustrate the complexities that are common

to this population and to provide practical information to

maximize the health and education outcomes of children with

dysphagia.

Results: SLPs in schools are increasingly evaluating and treating

children with dysphagia associated with medically complexconditions. There is a rising incidence in preterm births and the

survival of medically fragile children, suggesting that a greater

number of children will be at risk for dysphagia in the future.

Limited evidence is available to support most therapeutic

interventions.

Conclusion: School-based SLPs are uniquely positioned to identify

swallowing and feeding problems, evaluate and treat children with

dysphagia, participate on dysphagia teams in the school setting,

and interact with the medical team.

KEY WORDS: deglutition, feeding, swallowing, pediatric, team

LANGUAGE, SPEECH, AND H EARING S ERVICES IN S CHOOLS • Vol. 39 • 237–248 • April 2008 * American Speech-Language-Hearing Association

0161-1461/08/3902-0237

237



interventions with these children who have swallowing and feeding

issues.

Children with ongoing complex medical issues face a variety

of challenges that frequently include swallowing and feeding def-

icits. This article focuses on (a) the population trends and gen-

eral characteristics of children with dysphagia in schools, (b) an

overview of dysphagia teams and the role of the SLP in school

and hospital settings, and (c) assessment and treatment methodsthat are educationally relevant for children with complex medical

histories.

POPULATION TRENDS AND GENERALCHARACTERISTICS OF CHILDRENWITH DYSPHAGIA IN SCHOOLS

Population Trends Related to Pediatric Dysphagia

The prevalence of oropharyngeal dysphagia in the general

population and school-age children is not well defined; however,

there is general agreement concerning the increasing incidence

of pediatric dysphagia. Currently, approximately 12% to 13% of

school-based SLPs regularly provide services to children with

dysphagia (ASHA, 2004). Recent medical advances and birth

trends suggest that schools will need to service growing numbers

of children with these problems in the future.

Children with histories of prematurity are at increased risk for

impairments in deglutition (the act of swallowing) and disruptions

in feeding. They are more likely than term infants to experience a

period of non-oral feedings, at least one aspiration event, and the

need for alternative feeding methods (Burklow, McGrath, Valerius,

& Rudolph, 2002). These types of feeding problems have been

observed in children with significant respiratory challenges and

neurological problems (Burklow et al., 2002).The Centers for Disease Control and Prevention (CDC) has

reported an increase in preterm (<37 weeks gestation) births over

the past 2 decades. In 2003, the preterm delivery rates were 16%

higher than in 1990 and 30% higher than in 1981 (Martin et al.,

2005). From 2002 to 2003, the rate of premature births increased

from 12.1% to 12.3% of all 4,089,950 births registered in the United

States (Martin et al., 2005). This means that more than one half

million births in this 1-year period in the United States were preterm.

This rising incidence of preterm births suggests a future increase

in the number of children in school settings with impairments

in deglutition or at risk for such problems. In addition to the issues

surrounding prematurity, some term infants may have high risk

factors for swallowing and feeding problems. These risk factorsmay include craniofacial anomalies, cardiorespiratory deficits, air-

way problems that may require surgery (e.g., tracheostomy), and

gastrointestinal deficits (e.g., tracheoesophageal fistula, eosinophilic

esophagitis, motility problems).

Despite the improved survival rate of preterm low birthweight

infants, robust predictors of neurodevelopmental outcomes for

these infants remain unavailable. Nonetheless, there is general

agreement that school outcomes are inversely related to younger

gestational ages and lower birthweights, and directly related to

abnormal findings obtained from neuroimaging studies and neuro-

developmental examinations that were conducted during the

neonatal period (Allen & Capute, 1989; McGrath & Sullivan, 2002)

Preterm births account for more than 40% of all cases of cerebral

palsy (CP) (Hagberg, Hagberg, Beckung, & Uvebrant, 2001). In

addition, comorbidities associated with prematurity may negatively

influence a child’s growth and development. In particular, respiratory

disease and neurological involvement may contribute to impair-

ments in deglutition that persist beyond infancy (Burklow, Phelps,

Schultz, McConnell, & Rudolph, 1998). Furthermore, long-term

follow-up of school-age children and young adults who weredelivered prematurely has demonstrated that these children have

depressed academic, neurodevelopmental, and growth-related

outcomes compared to similar persons who were delivered at term

(Hack, 2006; McGrath & Sullivan, 2002).

General Characteristics of Children

With Dysphagia in Schools

School-age children with dysphagia are a heterogeneous group

of individuals with a variety of underlying diagnostic conditions

and a wide range of disabilities. In practice, the descriptor “school-

age” may be the most common feature shared by these children.

Infants who were considered to be medically fragile may have

grown into students with complex past medical histories. These

children are at increased risk for impairments in deglutition; those

with an early need for respiratory support may be at greatest risk

(Burklow et al., 1998). Some children continue to demonstrate

dysphagia involving one or more phases of swallowing. Others

have “outgrown” their swallowing problems. Still others may

demonstrate a regression in swallowing and feeding skills when

they are challenged with increased nutrition or hydration requirements,

when they are presented with foods that require more developmentally

mature oral sensorimotor skills (e.g., chewing), or when they ex-

perience intercurrent illnesses (e.g., respiratory or gastrointestinal).

These children are also at increased risk for behavioral-based

feeding difficulties (Burklow et al., 1998).Although children with complex medical histories, particularly

those associated with neurological impairment and respiratory

disease, are at increased risk for swallowing dysfunction, not all

have significant problems. The dysphagia team needs to monitor

“high-risk ” children for indications of potential swallowing dys-

function when children present with signs of common mealtime

problems such as rejection or limited intake of foods or liquids,

increased congestion while eating and drinking, coughing or chok-

ing during meals, a wet or gurgly voice quality before or after

swallowing, and excessive drooling. These children may be absent

from school more often than their peers because of respiratory

infections. The dysphagia team also needs to be alert to a small

number of children who present with swallowing dysfunction that appears to be isolated or not associated with complex medical

problems (Lefton-Greif, Carroll, & Loughlin, 2006). These chil-

dren may be identified as having problems when school activities

include snack or lunch.

Children with neurological conditions. The underlying condi-

tion and its evolution are primary factors that influence the mani-

festation and possible resolution of dysphagia. In children with

neurological conditions, the specific characteristics of the swal-

lowing dysfunction will be determined by the site of pathology.

The prognosis for recovery will be influenced strongly by whether

the underlying neurological condition is acute or chronic and, if

chronic, whether it is static or progressive. SLPs should be familiar

238 LANGUAGE, SPEECH, AND HEARING SERVICES IN SCHOOLS • Vol. 39 • 237–248 • April 2008



with major etiologies of dysphagia in childhood and the levels

of the nervous system affected (Table 1). Children with static

neurological diagnoses typically show gains in skills across a range

of domains as they make developmental progress, whereas those

with progressive neurological conditions may make developmental

gains for varied periods of time, but may eventually lose skills,

including swallowing and feeding skills. In addition, function may

be influenced by growth and developmental changes even whenchildren have static neurological etiologies. For example, some chil-

dren with CP may do well with pureed foods and develop problems

when they need to transition to solid foods that require chewing.

The most common neurological etiology in children with swal-

lowing and feeding dysfunction is CP, which is a static condition.

Although precise data are not readily available, it is estimated that

85% to 90% of children with CP have swallowing difficulties at

some times in their lives. More than half (57%) of all children

with CP are estimated to have problems sucking in the first year of

life, 38% with swallowing, and 33% with malnutrition (Reilly,

Skuse, & Poblete, 1996).

SLPs need to be aware of the four primary types of CP: spas-

tic (70%), choreoathetoid (20%), ataxic (10%), and mixed (most

often spastic and choreoathetoid combined). Children with spastic

diplegia (lower limb involvement primarily) are predicted to be total

oral feeders with essentially normal cognitive skills. They should

be verbal communicators, unless there are other complicating fac-

tors. These children rarely have seizures. Children with spastic

quadriplegia (involvement of all four extremities) have muscles that

are both stiff and weak. They are the most severely affected and

are far more likely to demonstrate oral feeding problems that in-

volve oral deficits and pharyngeal phase problems with possible

silent aspiration (Arvedson, Rogers, Buck, Smart, & Msall, 1994).

Children with choreoathetoid CP have muscles that spontaneously

move slowly and without normal control. In some of these chil-

dren, movements may be ballistic (abrupt and jerky). Childrenwith ataxic CP have poor coordination and shaky movements,

usually with muscle weakness and trembling. These children have

trouble making rapid or fine movements. They walk unsteadily

with legs widely spaced. The diagnosis of CP is often difficult

in early infancy. The specific type of CP often cannot be dis-

tinguished before a child is 18 months old. The type of CP should

be clearly delineated by the time children enter school.

Some children with spastic quadriplegia or with choreoathetosis

who have been total oral feeders as young children and through

elementary school years, often with marginal nutrition and hy-

dration status, may require supplemental nutrition that can range

from increased caloric density of some food and liquid under the

guidance of a dietitian, to a combination of oral and tube feeding, to

essentially total non-oral feeding as they reach puberty. Children

who are slow feeders (with mealtimes typically longer than 30 min)

are also likely to have difficulties in meeting their nutrition and

hydration needs, even if they are not at major risk for aspiration and

subsequent pulmonary problems. Those children at defined risks

Table 1. Determinants of manifestation and progression of dysphagia associated with neurological conditions (Adapted from Rogers, 1996 andIchord, 1994).

Site of pathology Acute

Chronic

Static Progressive

Central nervous system Hypoxic-ischemic encephalopathy Cerebral palsy Intracranial malignanciesCerebral infarctions Genetic disorders TumorsIntracranial hemorrhage Down syndrome LeukemiaInfections Skeletal dysplasias Lymphoma

Meningitis Familial dysautonomia Degenerative white and gray matter diseasesEncephalitis Riley-DayMetabolic disorders

(mucopolysaccharidoses)Botulism Congenital anomalies of the brain

Infections (HIV encephalopathy)Acute bilirubin encephalopathy

(kernicterus)Arnold-Chiari malformation

Demyelinating processes (multiplesclerosis)

Metabolic encephalopathiesMobius sequence

Rett syndrome

Traumatic encephalopathySyringomyelia

Spinocerebellar disordersTraumatic brain injury ( TBI)

Congenital varicella

Congenital ataxiasBrainstem injuries

Cerebrovascular infarctions

Ataxia-Telangiectasia

PoliomyelitisArteriovenous malformations

Joubert syndrome

TBI

Spinal muscular atrophy

Chronic posticteric encephalopathy

Brain stem tumor

Brain stem tumor

Peripheral nervous system Trauma ( basilar skull fracture) Polyneurophathies Spinal muscular atrophy

Poliomyelitis

Neuromuscular junction Botulism Myasthenia gravis

Muscles Inflammatory Congenital Metabolic myopathiesPolymyositis Myopathies Glycogen storage diseaseDermatomyositis Myotonic dystrophy Mitrochondrial

Muscular dystrophy D uchenne m uscular dystrophy

© 2006 M. A. Lefton-Greif and J. C. Arvedson. All Rights Reserved. Reprinted with permission.

Lefton-Greif & Arvedson: Dysphagia in Children With Medically Complex Conditions 239



for pharyngeal phase swallowing problems along with the reduced

nutrition/ hydration status become candidates for feeding tubes.

Members of the dysphagia team have primary responsibilities for

monitoring health status and for assisting parents to get adequate

pertinent information to allow them to make the best decisions

possible for each child.

In contrast to children with conditions that are identified early

in life, some children develop swallowing and feeding prob-lems as they get older. Children with neuromuscular or progres-

sive underlying conditions (e.g., spinal muscular atrophy

[SMA] Type II, muscular dystrophy, leukodystrophies, ataxia-

telangiectasia, and untreatable brain tumors) may be referred to

an SLP for evaluation when swallowing function deteriorates,

part icula rly when they need increased ti me to e at lunch at schoo l

because chew ing beco mes more difficult . Other child ren may

pres ent with swal lowi ng and feed ing probl ems when they retu rn

to school following an acute event (e.g., traumatic brain injury or

cerebral vascular accident).

Children with progressive neuromuscular conditions are prone

to increased problems with oral feeding as their disease process

advances (Table 1). Although these children may stabilize and

appear to make gains fairly early in the course of their disease,

over time, their skills will deteriorate and they may not be able to

continue as total oral feeders. Some of these children, especially

those with muscular dystrophy, have intact cognitive skills and

receptive language. Speech intelligibility and swallowing function

may deteriorate given the cranial nerve or muscle involvement.

The manifestation of the dysphagia will parallel the site of the

lesion, and the prognosis will be determined by the course of the

underlying condition. These students may exhibit dysphagia in

any or all phases of swallowing (i.e., oral preparatory/bolus

formation, oral, pharyngeal, or esophageal).

Children with respiratory conditions. Children with respiratory

problems as part of their complex medical conditions and devel-

opmental delays are at increased risk for oropharyngeal dysphagia(Seddon & Khan, 2003; Toder, 2000). Neurological impairment and

underlying lung conditions are likely to co-exist, interact, and

contribute to respiratory vulnerability by (a) disrupting the child’s

temporal coordination between breathing and swallowing and

thereby increasing the risk of aspiration and (b) decreasing the

child’s ability to tolerate the respiratory and nutritional sequelae

associated with dysphagia.

Temporal coordination of breathing and swallowing is critical

for protection of the lungs because breathing and swallowing share

the pharynx as a common pathway for food and air. Aberrant

respiratory–swallowing coupling may favor aspiration, particularly

when inspiration occurs while a bolus is adjacent to an open airway

(Hadjikoutis, Pickersgill, Dawson, & Wiles, 2000; Paydarfar,Gilbert, Poppel, & Nassab, 1995; Shaker et al., 1992). Incoordi-

nation between respiration and swallowing occurs in children with

neurological conditions such as CP (Rempel & Moussavi, 2005)

and may result in hypoxemia and pneumonia (Loughlin, 1989;

Rogers, Msall, & Shucard, 1993). Chronic lung disease (CLD), the

most common adverse outcome of prematurity, is also associated

with atypical respiratory–swallowing patterns (Timms, DiFiore,

Martin, & Miller, 1993).

Pharyngeal phase dysfunction, particularly when characterized

by disruptions in respiratory–swallowing coordination, may re-

sult in an increased risk for aspiration of saliva, liquid, or solid food

into the airway. Furthermore, the failure to cough or clear the throat

in response to aspiration (i.e., “silent aspiration”) is common in

children with complex medical histories and dysphagia (Arvedson

et al., 1994; Brumbaugh & Accurso, 2002; Frazier & Friedman,

1996). The risk of pulmonary infection increases when aspiration

occurs without an effective cough or airway clearance response

after a foreign material enters the airway.

Multiple factors influence each child’s ability to tolerate the

respiratory consequences associated with oropharyngeal dysphagia(Seddon & Khan, 2003; Toder, 2000). These factors may include

but are not limited to:

& the severity of swallowing dysfunction and whether an

effective cough is produced if aspiration occurs

& nutrition status

& the competency of airway clearance mechanisms (e.g.,

mucocillary clearance)

& the degree of pulmonary reserve (due to chest wall or spinal

deformities)

& the presence of residual CLD (CLD of prematurity).

Toder provides an excellent review of common respiratory problems

in adolescents with developmental disabilities.

OVERVIEW OF DYSPHAGIA TEAMS ANDTHE ROLES OF THE SLP IN SCHOOLAND HOSPITAL SETTINGS

Collaboration between school and medical-based teams is

crucial for meeting the needs of children with complex medical

issues related to their swallowing and feeding. These children

often have medical, and in some instances, surgical issues that will

have an impact on their health, development, and overall well-

being. All of these issues may impact negatively on the child’sability to participate in educationally focused activities. Thus,

successful evaluation and treatment of children with dysphagia

requires the expertise of professionals in multiple disciplines as

well as coordination of these efforts.

Members of school-based dysphagia teams need to work with

caregivers and health care professionals to determine the best means

to address the needs of these children in order to maximize their

participation in the education process. School-based teams do not

have the benefit of “onsite” access to immediate medical care for

these children, or to determine whether to treat or not treat a child

who does not appear safe to feed or how to advance a swallow-

ing and feeding program in children with previously documented

oropharyngeal dysphagia and silent aspiration. In turn, hospital- based teams rely on their colleagues in the schools for monitoring

each child’s progress and reporting any changes in status that need

to be addressed.

Team processes, structures (e.g., interdisciplinary or multidis-

ciplinary), and respective members may vary in different settings

and according to the needs of specific children (Homer, 2003;

Lefton-Greif & Arvedson, 1997). All SLPs participating on school

or medical teams must have extensive knowledge of and experience

with the various etiologies underlying dysphagia. They also must

demonstrate skills to interpret signs and symptoms of oropharyn-

geal dysphagia in the context of associated pulmonary and nutrition

sequelae. SLP roles may include, but are not limited to, assessing




and treating oral sensorimotor, feeding, and communication prob-

lems during meals; identifying needs for medical referrals that

may result in additional diagnostic workups; initiating referrals

for instrumental swallowing evaluations that may involve other

specialists; and consulting and collaborating with caregivers and

other professionals. In addition, hospital-based SLPs may also

conduct and interpret instrumental swallowing evaluations and

assist with goal writing for implementation of children’s individ-

ualized educational program (IEP). In conjunction with maintaining

ongoing communication between family and medical professionals,

the school SLP will be responsible for monitoring the child’s

progress and initiating re-evaluations as the child demonstrates

improvement or regression in the clinical presentation or underlying

condition.

ASSESSMENT AND TREATMENT THAT AREEDUCATIONALLY RELEVANT FOR CHILDRENWITH COMPLEX MEDICAL HISTORIES

Some school systems have a standard approach for evaluating

students with dysphagia. Others may use an IEP as the mechanism

for starting this process (Homer, 2003). The dysphagia team in

St. Tammany Parish, LA, developed a team approach for the

diagnosis and treatment of children in the school setting (Homer,

2003). Their goals, which may be adapted by other school-based

teams, include the following:

& Ensure safe nutrition and hydration to every child during

school hours.

& Evaluate the student.

& Provide information to support the need for a videofluoroscopic

swallow study (VFSS) and observe the procedure when

possible.& Design and implement a treatment plan.

& Develop compensatory strategies to facilitate safe swallowing.

Team collaboration will be discussed further in the assessment and

management sections of this article.

Assessment in the Educational Setting

In most instances, by the time a child is in school, a diagnosis

of the underlying etiology has been made. Thus, the school-based

SLP is not examining a child for a differential diagnosis, but

rather for determination of function and safety for oral feeding.

Prognosis related to long-term safe and efficient oral feedingis likely to relate more closely to the etiology than to specific

observations during a single feeding evaluation. That said, school-

based SLPs have the advantage of being uniquely positioned to

interact with each child’s “real-world” environment. They have

opportunities to observe children eating and drinking in the typical

school environment. They can make their assessments of skills

and deficits over several meals or snacks, which allows the

team to consider the “whole child” in planning intervention

strategies.

Every evaluation of a child with swallowing and feeding con-

cerns begins with a thorough history, as do all evaluations that

are carried out by SLPs. The history focuses on swallowing and

feeding progression in relation to the child’s symptoms, underlying

medical conditions, nutrition status, and developmental progress.

Knowledge of general anatomy and physiology, and most impor-

tantly, neuroanatomy and neurophysiology of the upper aero-

digestive tract and the related body systems, is necessary because

that knowledge forms the basis for clinical observations.

The SLP’s physical examination begins with observations of the

child’s general appearance and overall well-being. It is important to

consider growth parameters and to observe respiratory patterns.

Although portions of this examination focus on oral sensorimotor

skills, it is critical that the SLP acquire information regarding the

acquisition of gross and fine motor developmental milestones as

well as level of cognitive and language (receptive and expressive)

development. The examination of the oral peripheral mechanism

is basically an examination of cranial nerve innervation so that

the sensory and motor deficits can be delineated. It also provides

important information regarding oral structures and motor func-

tion in regard to range and strength of oral movements neces-

sary for speech and feeding. Guidelines for oral sensorimotor

evaluation of children with swallowing and feeding problems

can be found in multiple sources and will not be covered in de-

tail here (Arvedson & Brodsky, 2002; Arvedson & Lefton-Greif,

1998; Logemann & O’Toole, 2000). Professionals who are involved

with any child who feeds orally should observe an oral feeding at

school, preferably with a familiar feeder.

The SLP also assesses the child’s communication skills relative

to feeding and mealtimes. The primary question to be answered is:

Does this child appear safe for oral feeding? If the answer is yes,

then one considers whether possible alterations would enhance the

child’s efficiency, safety, and oral skills. The answer is no when

feeding is associated with potential signs of aspiration, including

the onset of respiratory-related problems (e.g., coughing, choking,

changes in breathing or phonatory patterns), declines in alertness or

activity level, or compromises in the ability to handle oral secre-

tions. When a child who has been eating orally does not appear tofeed safely, the SLP should consider an instrumental swallowing

examination to assist in decision making for short- and long-term

goals. There may be qualifications to the answers yes and no, such

as “not safe for total oral feeding, but child should be able to take

spoon feeding with small volumes of smooth or lumpy mashed

food,” or “child appears to be able to handle liquid and spoon feed-

ing, but is not ready developmentally for solid foods that require

chewing.” These qualifications are dependent on multiple factors

that include the ability of the child to protect the airway, the devel-

opment of oral sensorimotor skills necessary to meet nutrition needs,

and the child’s overall developmental skill levels. Considerations

for referral for instrumental evaluation can be discussed by the

dysphagia team with likely recommendation to the child’s pedia-

trician for a referral to radiology at the nearest hospital, preferably

with pediatric specialists.

Instrumental Swallowing Assessment

When a school dysphagia team has concerns about pharyngeal

phase swal lowi ng probl ems and possi ble aspir ation with oral

feeding, a VFSS is needed to delineate the oral and pharyngeal

phases of swallowing as well as to visualize the upper esophagus

in order to report on the complete swallowing sequence. The expec-

tation is that the VFSS will provide information needed for parents

and professionals to make decisions regarding the potential safety




of eating at school and to develop appropriate interventions for the

child with dysphagia. A physician’s order is generally needed to

obtain a VFSS.

Before the instrumental examination, the school SLP should

notify the hospital-based SLP about the concerns noted by the

school staff and the reasons prompting this referral (Homer, 2003).

The information provided by the school-based SLP is crucial for

the hospital-based SLP to complete a valid and reliable study. TheAppendix provides an overview of information that would be

helpful for the SLP in the hospital setting before an instrumental

assessment. Communication between settings is enhanced when

a representative from the school accompanies the child and his

or her caregiver to the hospital for the instrumental assessment.

A signed release of information should be obtained to ensure

permission for sharing information.

Findings from the VFSS should be helpful as the school dys-

phagia team members work with parents to make the best decisions

regarding the extent of oral feeding for each child, as well as

possible restrictions in textures of food and liquid. In addition,

recommendations from VFSS findings should contribute informa-

tion that will enable the school dysphagia team to identify thera-

peutic strategies to facilitate improved efficiency of oral feeding,

to make modifications in posture and position, to select utensils, and

to make other adjustments as needed.

Ideally, findings from the VFSS will include a summary of the

swallowing function related to the potential etiology for swallowing

abnormalities and an estimate of how reliably the findings reflect

the child’s swallowing status. If aspiration was noted during the

examination, the child’s response (or lack of response) to barium

contrast entering the airway must be described. It is also impor-

tant that the report specifies which textures of food or liquid were

aspirated; whether the aspiration occurred before, during, or after

swallows (Arvedson et al., 1994); and the physiologic bases for the

aspiration events. It is also critical to know whether aspiration

problems arise from material entering the airway related to swal-lowing or from gastroesophageal reflux (it is beyond the scope of

this article to cover this topic). Although minimal amounts of silent

aspiration occur in normal and healthy individuals (Gleeson, Eggli,

& Maxwell, 1997; Huxley, Viroslav, Gray, & Pierce, 1978), col-

laboration with the child’s medical team is critical for estimating the

amount of aspiration that can be tolerated by any child with complex

medical conditions who is more vulnerable to the respiratory se-

quelae of aspiration.

Management

Children should be able to participate in family and school

activities to their maximum potential. Appropriate management

strategies and prognostic indicators will be determined by each

child’s specific profile of underlying conditions, medical and

neurodevelopmental status (including oral sensorimotor skill

development), family and social systems, educational setting,

and ethical considerations. The selection of appropriate goals re-

quires consideration of how these factors influenced swallowing

and feeding development in the past and how they may continue

to influence these processes. Interventions related to swallowing

and feeding disorders may include the following:

& providing information and guidance to students, families, and

caregivers about the nature of swallowing and swallowing

disorders;

& consulting and collaborating with medical providers throughout

planning and intervention;

& training caregivers and educational staff on safe eating and

swallowing techniques; and

& instructing families, caregivers, and educators about the

social–emotional relationship between feeding and swallowing

and educational success. (ASHA, 2000, p. 281)

The SLP’s role in direct therapeutic intervention is to focus on

developmentally appropriate oral sensorimotor and feeding skills

that support airway stability and nutritional adequacy. Table 2

provides a framework for consideration of goal development. Each

school district, team of professionals, and child with family will

be faced with unique challenges. Two case studies follow as exam-

ples of problem solving for children with complex medical issues.

Case 1: 8-Year-Old Child With Complex Medical

(Neurological) Issues

Sammy has a diagnosis of CP, primarily characterized by

choreoathetosis and ballismus (abnormal jerking or swinging

movements). This combination of neurologically based motor

deficits resulted in complex interactive issues. Although Sammy

was nonverbal, his receptive language and cognitive skills appeared

only mildly reduced. He wanted to eat and drink, although his

parents reported that he expended significant effort as he worked

to bring his lips together, get his tongue moving in an organized

way to form a bolus, and produce swallows after as long as 60 s.

Sammy coughed at times on liquid that he drank by straw, which

resulted in less spillage than an open cup. Mealtimes were taking at

least 1 hr for a fairly small volume of food and liquid. Sammy had

not gained weight adequately for the previous several months.

Pertinent history. At 22 years of age, Sammy had demonstrated

incoordination of swallowing on a VFSS without frank aspiration.

His parents developed techniques to facilitate the most efficient mealtimes possible.

Current status. At school, Sammy was in a half-day program,

primarily because of his feeding problems. Sammy’s parents were

determined to keep Sammy feeding totally orally. The team mem-

bers needed to decide whether oral skill practice should be incor-

porated into speech motor focuses that were part of Sammy’s IEP.

Dysphagia team members have to keep in mind that over time,

Sammy’s difficulty in meeting nutrition and hydration needs will

likely become even more problematic as his caloric needs increase.

Case 2: 7-Year-Old Child With Complex Medical

(Respiratory) Issues

Emily was delivered at 36 weeks gestation. She was diagnosed

with mild CP, developmental delays, reactive airway disease, and

dysphagia. Emily’s mother took her to the pediatrician because of a

2-month history of coughing and congestion that began immedi-

ately after the volume of oral feedings was increased in an effort

to transition Emily from tube to oral feedings. Previously, most

of Emily’s nutrition and hydration was delivered by gastrostomy

tube (GT), and she was given limited amounts of pureed food and

a few sips of water daily. Her interest in eating and drinking was not

clear to caregivers. Her mother reported that the school wanted

Emily to increase oral intake so that she could eat lunch in the

cafeteria and participate more fully in school-related activities.




Past history. Shortly after birth, Emily was noted to have pro-found hypotonia, a poor suck, and significant silent aspiration on an

upper gastrointestinal (UGI) series. A GT was placed after Emily

failed to progress with oral feeding during several months at a

rehabilitationhospital. Emily was also diagnosed withreactive airway

disease, moderate obstructive sleep apnea, gastroesophageal reflux,

recurrent pneumonia, and an undefined neuromuscular process. At

2 yearsof age, Emily participated in a VFSS that demonstrated a delay

in swallow onset that resulted in silent aspiration before swallows

with thin and thick liquids andpoor pharyngeal clearance with pureed

contrast. She developed respiratory problems characterized by

increased congestion and chronic coughing each time efforts were

made to increase her oral intake. Emily had developmental delays

and began walking at 3 years of age, speaking 3–

5 words at 2 years,and speaking complete sentences at 6 years.

Current status. A repeat VFSS showed no change in swallowing

function or patterns of aspiration from the prior examination. The

school and medical teams need to determine appropriate swallowing

and feeding goals with updated VFSS findings and, more impor-

tantly, in response to Emily’s respiratory changes when oral feedings

were increased.

Case Study Questions and Answers

What do school professionals do when they feel that a child

is not safe for oral feeding at school but parents insist that the

Table 2. Common factors that influence the determination of appropriate goals for children with dysphagia.

Factors Past Current

Appropriate goals(prognosis and

compensatory abilities)

Anatomic or Structural DefectsSite of defect and onset (congenital or acquired)Potential phase(s) of swallowing impairment Stressors

Neurological DeficitsSite and onset of pathology Nature of pathology (acute, chronic [static or progressive])

Potential phase(s) of swallowing impairment Stressors

Medical/Health InfluencesCardiopulmonary stability Nutritional statusImmune systemMedicationsEndurance

Neurodevelopmental StatusCurrent and anticipated skill levels (communication, gross & fine motor skills)

State (infants)Attention span, language, cognitive functionSensorimotor integration problemsTemperament or behavior (including feeding refusal, aversion, appetite)

Oral Motor SkillsInefficient or abnormal patternsPrevious non- & nutritive experiencesPrevious therapy experiences

Caregiver/Family FactorsEmotional /economic support systemsEducational levelParenting skills, concerns, needsCultural influences

Access to medical servicesRelationship w/ medical & swallowing and feeding teams

Educational/Swallowing and Feeding Team FactorsSettingTeam members (e.g., type, disciplines, training)Access to and availability of (re)habilitation servicesStrengths & weaknesses of team or team members

Relationship w/ caregiversIndividual educational plan goals

Other Factors: Ethical Considerations

Principles

© 2006 M. A. Lefton-Greif and J. C. Arvedson. All Rights Reserved. Reprinted with permission.




child be fed and that “ he will be just fine if you use our techniques” ?

How do educational settings maximize student participation

when a child is not safe for oral feeding? SLPs and other members

of the school-based team are often placed in very difficult situations

when parents want a child fed in school “ just like the child does

at home.” When faced with such dilemmas, professionals may need

to invoke ethical principles and considerations ( Huffman & Owre,

2008) along with clinical decision making. Numerous factors needto be considered, primarily those related to the adequacy of

nutrition/hydration (or inadequacy in some cases) and pulmonary

status. It is important to remember that oral sensorimotor inter-

ventions or other therapeutic procedures must never jeopardize the

adequacy of the child’s nutrition, hydration, or respiratory status.

Parents should be included in the process of decision making,

making it collaborative rather than adversarial. Competent parents

have autonomy or the right to make informed decisions about fac-

tors affecting the health of their children. However, professionals

also have to make decisions based on evidence related to the

child’s overall status, with safety as the uppermost consideration.

The cases described above provide examples for possible decision-

making processes.

Case 1: Alternatives for school staff members include (a) the

parent coming to school to feed Sammy; (b) the parents

demonstrating their feeding techniques with at least two primary

staff members trained to feed Sammy for 10–15 min each

session, and parents making up the needed volume at home;

or (c) continuing to adjust Sammy’s schoolday so that he does

not need to be fed at school.

Case 2: The school staff and caregivers need to identify “safe”

activities that allow Emily to participate in her educational

program as fully as possible. It may be appropriate for goals

to focus on oral motor and communication skills development

during lunch (with her “safe” amount of intake) or at other times

during the day.When is a repeat VFSS indicated? Concerns about the poten-

tial long-term effects of ionizing radiation for children (de Jong

et al., 2006) mandate that a repeat VFSS should be considered

only when there are specific questions or concerns that require

information from a repeat study. The primary purpose of the VFSS

is to define the pharyngeal physiology. Therefore, when the dys-

phagia team determines that a student has demonstrated changes

that may alter management plans, a repeat VFSS can be considered,

particularly when definite pharyngeal phase disorders or problems

were noted on a previous examination. School SLPs play a very

important monitoring role for children with complex medical issues.

Indications of regression may include reduced levels of alertness,

prolonged feeding times, increased signs of respiratory illnessesor airway concerns (e.g., coughing, congestion, exacerbations of

reactive airway disease), signs of gastrointestinal problems (e.g.,

gagging, regurgitation or vomiting, or growth compromise), and

less efficient oral skills for forming a bolus and for initiating swal-

lows that may in turn result in prolonged mealtimes and adversely

affect the child’s nutrition and hydration status. Conversely, some

of these functions may improve. Some children may become more

alert or mealtimes may become shorter because of greater oral

efficiency. The bottom line is that observations indicate that change

is occurring and information is needed for the management of

feeding. The delivery of appropriate medical care is contingent on the

child’s physician being advised of any changes in condition.

Case 1: A repeat VFSS was requested when Sammy was 9 years

old. Mealtimes were taking 45–60 min, with increased effort

by Sammy and his parents, who continued to facilitate as

efficient mealtimes as possible. Sammy appeared more stressed

as he was eating and drinking. VFSS findings revealed

multiple events of silent aspiration, most pronounced just

before swallows of liquid because of delayed initiation of the

pharyngeal swallow, but also on residue of pureed and mashedfood consistent with reduced tongue base retraction to the

posterior pharyngeal wall and reduced pharyngeal contractions.

By that time, it was clear that Sammy could not be expected

to meet his nutrition and hydration needs strictly orally.

Case 2: Emily’s mother and pediatrician requested a repeat

VFSS as soon as Emily developed respiratory problems in

response to increased oral intake. The findings of the VFSS

showed silent aspiration of liquids secondary to delayed

pharyngeal swallow initiation and residue of pureed contrast

associated with poor base of tongue retraction and pharyngeal

contraction. Residue accumulated with successive swallows

but did not result in further aspiration on the images obtained.

This information enabled the school-based team to developmore appropriate and more consistent goals for school and

home. Specifically, Emily resumed her previous feeding

routines, including getting small tastes of pureed foods for

enjoyment and participation in school lunch activities.

On what basis can the school-based SLP incorporate oral

sensorimotor skills for feeding into the IEP? The Individuals With

Disabilities Education Improvement Act (IDEA, 2004) mandates

that school systems provide related health services. In turn, IDEA

requires school systems to provide free and appropriate public

education (FAPE) to all children, which means that school staff

members must ensure that children are safe at school. That safety

mandate includes the need for each child to receive nutrition and

hydration as appropriate while the child is in school. IDEA revi-sions advance trends for mainstreaming medically complex children

with swallowing and feeding problems. These changes have re-

sulted in increases in the prevalence of dysphagia in “regular ”

schools. The ASHA Guidelines for the Roles and Responsibilities

of the School-based Speech-Language Pathologist (ASHA, 2000)

make it clear that dysphagia is in the scope of practice for SLPs.

Those SLPs who have been trained in dysphagia have an ethical

responsibility to ensure that competent services are provided for

children on their caseloads. The ASHA guidelines (2000, p. 281)

state,

Swallowing function treatment is conducted to improve student ’soral, pharyngeal, and laryngeal neuromotor function and control andcoordination of respiratory function with swallowing activities. This

treatment can (1) facilitate chewing and swallowing safely andefficiently and (2) integrate swallowing function intervention withcommunication function intervention.

Case 1: Sammy’s SLP incorporated short periods of practice to

improve his oral sensorimotor skills. She included small volume

tastes of food and water to facilitate purposeful swallowing,

with hope that management of secretions would be positively

affected.

Case 2: At 7 years of age, Emily had a confirmed diagnosis

of congenital myotonic dystrophy (CMD, Type 2). This

condition is usually static (Table 1) and may include swallowing

deficits that affect all phases of swallowing as well as lower




gastrointestinal tract dysmotility. Early treatment may include

feeding tube placement (Moxley & Yurcheshen, 2005). This

scenario is particularly interesting because identification of

Emily’s underlying condition should alert the school team of

the potential need to modify her IEP at more frequent intervals

as she ages. CMD is associated with poor and slow early de-

velopment followed by an accelerated rate of improvement.

Hence, Emily’s developmental progress is likely to be more

rapid during school years than was previously expected or

predicated with other static conditions (e.g., CP), and her educa-

tional goals will need to be adjusted accordingly. Following the

VFSS, Emily’s SLP worked on oral sensorimotor skills (e.g.,

lip closure) during communication activities (e.g., bilabial

consonant productions) and during her “safe” lunchtimes (to

maintain food in her mouth). Further advancement of oral feed-

ings will need to be considered in the context of Emily’s pro-

gression. It is likely that a VFSS will be repeated before the team

recommends any significant increases in oral intake. At each

step of the process, goals need to support nutrition and hydration

adequacy as well as pulmonary stability.

What programs can the school provide when a child is fed by GT with physician orders that state “ child is to be kept NPO

(nothing per oral)” ? There is no simple answer to this question.

Multiple variables that change over time must be considered for each

child. All children have saliva that should be swallowed on a regular

basis. Saliva is important for moistening the mouth, pharynx, and

esophagus. The oral cavity is filled with bacteria. It would seem

logical that some children would benefit from sensory cues to

produce swallows regularly, whether saliva or tastes of food and

liquid. Oral stimulation with gum massagers and other utensils may

stimulate increased salivary production. Children who are not

swallowing saliva regularly may be at increased risk for aspiration

of their secretions.

Data are needed to determine whether miniscule tastes of food

or liquid may facilitate more frequent swallowing of saliva while

keeping children at minimal risk for aspiration complications. On

the basis of clinical experience, some children appear to produce

harder and quicker swallows when they get a drop or two of a strong

flavor (e.g., lemon juice, pickle juice, salsa, or spicy spaghetti

sauce). Each child’s responses to any kind of oral stimulation/

practice must be interpreted by SLPs in order to evaluate the child’s

status and potential for increased volume of oral intake. Oral stimu-

lation experiences should never be stressful to children. Children

should never be force fed. There is a fine line between nudging and

forcing.

Most children respond better to some form of oral stimulation

with or without true oral feeding when they are given frequent and

brief opportunities for practice. Children with severe neuromotor deficits and demonstrated pharyngeal phase swallowing problems

may never become total oral feeders to meet their nutrition and

hydration needs, but many will achieve some safe level of thera-

peutic and pleasurable oral feeding experiences. For these children,

more appropriate therapies may focus on oral hygiene, control

of saliva, and communication skills. Poor oral hygiene has been

shown to be an important risk factor for pneumonia in adults

(Langmore et al., 1998). Although comparable data are not avail-

able for children, it would seem logical that good oral hygiene

would be an important goal for all children, particularly those

with complex medical or health care issues. SLPs and other

members of the dysphagia team must be well aware that oral

sensorimotor intervention procedures should never jeopardize a

child’s pulmonary or nutrition/hydration stability.

Under what circumstances can the dysphagia team at school

consider a goal for weaning from GT feedings? For some children,

improving the efficiency of oral sensorimotor skills for feeding

may be one step in the process of increasing their volume of oral

intake. It is critical that a major focus on increasing the volumeof oral feeding should be done only with involvement of a physician

and dietitian who monitor the child’s overall health status and

adequacy of nutrition/hydration status. Many children with com-

plex medical conditions do not demonstrate appetite or hunger,

which is important and affects both the speed and efficacy of

treatment (Linscheid, Budd, & Rasnake, 1995). A psychologist

who specializes in behavior-focused intervention with feeding

disorders may also be an integral member of the team for those

focuses. Medical input on pulmonary status is needed for children

with underlying lung disease. These children may have more

difficulty tolerating aspiration than children without pulmonary

problems. Conditions for weaning include stable respiratory health

as well as other medical issues (e.g., seizure disorder well managed

with medications, gastroesophageal reflux controlled by medica-

tion, vomiting decreased or eliminated, gastrointestinal motility

disorder improved), demonstrated weight gain via tube feedings

with some tolerance for bolus tube feedings (e.g., no vomiting),

and safety in terms of minimal to no risk for aspiration with oral

feeding.

CONCLUSION

Students with complex medical conditions and dysphagia are

commonly attending regular schools as part of the IDEA mandates

for FAPE for all students in the least restrictive environment. SLPsin the schools are now faced with the need to have knowledge

and skills pertinent to these children. The complex interactions of

respiratory function and neurodevelopmental skills must be appre-

ciated and understood by SLPs, who in many instances take the

lead for the development of dysphagia teams and who incorporate

oral skills related to feeding into their goals for children who also

have communication deficits. A team approach is critical so that

“whole” child needs are considered in the educational environment.

SLPs are within their scope of practice to participate in the team

process and to evaluate and carry out intervention with children

who have oral skill and swallowing problems that may impact

their educational program.

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Received June 5, 2006

Accepted October 16, 2006

DOI: 10.1044/0161-1461(2008/023)

Contact author: Maureen A. Lefton-Greif, Division of Pediatric Pulmonary,

Johns Hopkins Children’s Center, The David M. Rubenstein Child Health

Building, 200 North Wolfe Street, Eudowood Division of Pediatric Respiratory

Sciences, Room 3017, Baltimore, MD 21287-2533. E-mail: [email protected].




APPENDIX (P. 1 OF 2). SAMPLE FORM OF INFORMATION PROVIDED BY A SCHOOL-BASED SPEECH-LANGUAGEPATHOLOGIST (SLP) TO A HOSPITAL-BASED SLP BEFORE AN INSTRUMENTAL SWALLOWING EVALUATION




APPENDIX (P. 2 OF 2). SAMPLE FORM OF INFORMATION PROVIDED BY A SCHOOL-BASED SPEECH-LANGUAGEPATHOLOGIST (SLP) TO A HOSPITAL-BASED SLP BEFORE AN INSTRUMENTAL SWALLOWING EVALUATION

© Lefton-Greif and Arvedson, 2006




DOI: 10.1044/0161-1461(2008/023)2008;39;237-248 Lang Speech Hear Serv Sch

Maureen A. Lefton-Greif, and Joan C. Arvedson

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