LSHSS

Clinical Forum

Schoolchildren With Dysphagia Associated With Medically Complex Conditions

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

Joan C. Arvedson
Childrens Hospital of WisconsinMilwaukee Medical College of WisconsinMilwaukee

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.
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.

According to the American Speech-Language-Hearing Association (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 communication. 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 environment 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
Results: SLPs in schools are increasingly evaluating and treating children with dysphagia associated with medically complex conditions. 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

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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 deficits. This article focuses on (a) the population trends and general 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 methods that are educationally relevant for children with complex medical histories.

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 childs growth and development. In particular, respiratory disease and neurological involvement may contribute to impairments 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 were delivered 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).

POPULATION TRENDS AND GENERAL CHARACTERISTICS OF CHILDREN WITH 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 factors may include craniofacial anomalies, cardiorespiratory deficits, airway 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 neurodevelopmental examinations that were conducted during the neonatal period (Allen & Capute, 1989; 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 schoolage 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 experience 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 dysfunction 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 choking 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 children may be identified as having problems when school activities include snack or lunch. Children with neurological conditions. The underlying condition and its evolution are primary factors that influence the manifestation and possible resolution of dysphagia. In children with neurological conditions, the specific characteristics of the swallowing 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

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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 when children have static neurological etiologies. For example, some children 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 swallowing 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: spastic (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 factors. 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 involve 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 children, movements may be ballistic (abrupt and jerky). Children with 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 distinguished 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 hydration 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 and Ichord, 1994).

Chronic Site of pathology Central nervous system Acute Hypoxic-ischemic encephalopathy Cerebral infarctions Intracranial hemorrhage Infections Meningitis Encephalitis Botulism Acute bilirubin encephalopathy (kernicterus) Metabolic encephalopathies Traumatic encephalopathy Traumatic brain injury ( TBI ) Brainstem injuries Poliomyelitis Static Cerebral palsy Genetic disorders Down syndrome Skeletal dysplasias Familial dysautonomia Riley-Day Congenital anomalies of the brain Arnold-Chiari malformation Mobius sequence Syringomyelia Congenital varicella Cerebrovascular infarctions Arteriovenous malformations TBI Chronic posticteric encephalopathy Brain stem tumor Progressive Intracranial malignancies Tumors Leukemia Lymphoma Degenerative white and gray matter diseases Metabolic disorders (mucopolysaccharidoses) Infections (HIV encephalopathy) Demyelinating processes (multiple sclerosis) Rett syndrome Spinocerebellar disorders Congenital ataxias Ataxia-Telangiectasia Joubert syndrome Spinal muscular atrophy Brain stem tumor Spinal muscular atrophy Poliomyelitis Myasthenia gravis Congenital Myopathies Myotonic dystrophy Muscular dystrophy Metabolic myopathies Glycogen storage disease Mitrochondrial Duchenne muscular dystrophy

Peripheral nervous system Neuromuscular junction Muscles

Trauma (basilar skull fracture) Botulism Inflammatory Polymyositis Dermatomyositis

Polyneurophathies

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

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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 problems as they get older. Children with neuromuscular or progressive underlying conditions (e.g., spinal muscular atrophy [SMA] Type II, muscular dystrophy, leukodystrophies, ataxiatelangiectasia, and untreatable brain tumors) may be referred to an SLP for evaluation when swallowing function deteriorates, particularly when they need increased time to eat lunch at school because chewing becomes more difficult. Other children may present with swallowing and feeding problems when they return 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 developmental 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 childs temporal coordination between breathing and swallowing and thereby increasing the risk of aspiration and (b) decreasing the childs 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 respiratoryswallowing 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). Incoordination 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 respiratoryswallowing patterns (Timms, DiFiore, Martin, & Miller, 1993). Pharyngeal phase dysfunction, particularly when characterized by disruptions in respiratoryswallowing coordination, may result 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 childs 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 AND THE ROLES OF THE SLP IN SCHOOL AND 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 wellbeing. All of these issues may impact negatively on the childs ability 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 swallowing and feeding program in children with previously documented oropharyngeal dysphagia and silent aspiration. In turn, hospitalbased teams rely on their colleagues in the schools for monitoring each childs progress and reporting any changes in status that need to be addressed. Team processes, structures (e.g., interdisciplinary or multidisciplinary), 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 oropharyngeal dysphagia in the context of associated pulmonary and nutrition sequelae. SLP roles may include, but are not limited to, assessing

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and treating oral sensorimotor, feeding, and communication problems 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 childrens individualized educational program (IEP). In conjunction with maintaining ongoing communication between family and medical professionals, the school SLP will be responsible for monitoring the childs progress and initiating re-evaluations as the child demonstrates improvement or regression in the clinical presentation or underlying condition.

ASSESSMENT AND TREATMENT THAT ARE EDUCATIONALLY RELEVANT FOR CHILDREN WITH 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 feeding is likely to relate more closely to the etiology than to specific observations during a single feeding evaluation. That said, schoolbased SLPs have the advantage of being uniquely positioned to interact with each childs 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 concerns 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 childs symptoms, underlying medical conditions, nutrition status, and developmental progress. Knowledge of general anatomy and physiology, and most importantly, neuroanatomy and neurophysiology of the upper aerodigestive tract and the related body systems, is necessary because that knowledge forms the basis for clinical observations. The SLPs physical examination begins with observations of the childs 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 function in regard to range and strength of oral movements necessary 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 detail here (Arvedson & Brodsky, 2002; Arvedson & Lefton-Greif, 1998; Logemann & OToole, 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 childs 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 childs 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 secretions. When a child who has been eating orally does not appear to feed 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 feeding, 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 development of oral sensorimotor skills necessary to meet nutrition needs, and the childs overall developmental skill levels. Considerations for referral for instrumental evaluation can be discussed by the dysphagia team with likely recommendation to the childs pediatrician 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 swallowing problems and possible aspiration 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 expectation is that the VFSS will provide information needed for parents and professionals to make decisions regarding the potential safety

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of eating at school and to develop appropriate interventions for the child with dysphagia. A physicians 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. The Appendix 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 dysphagia 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 information that will enable the school dysphagia team to identify therapeutic 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 childs swallowing status. If aspiration was noted during the examination, the childs response (or lack of response) to barium contrast entering the airway must be described. It is also important 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 swallowing 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), collaboration with the childs 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 sequelae of aspiration.

& 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 socialemotional relationship between feeding and swallowing and educational success. (ASHA, 2000, p. 281) The SLPs 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 examples 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. Sammys parents were determined to keep Sammy feeding totally orally. The team members needed to decide whether oral skill practice should be incorporated into speech motor focuses that were part of Sammys IEP. Dysphagia team members have to keep in mind that over time, Sammys difficulty in meeting nutrition and hydration needs will likely become even more problematic as his caloric needs increase.

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 childs 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 requires 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;

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. Emilys mother took her to the pediatrician because of a 2-month history of coughing and congestion that began immediately after the volume of oral feedings was increased in an effort to transition Emily from tube to oral feedings. Previously, most of Emilys 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.

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

Factors Anatomic or Structural Defects Site of defect and onset (congenital or acquired) Potential phase(s) of swallowing impairment Stressors Neurological Deficits Site and onset of pathology Nature of pathology (acute, chronic [static or progressive]) Potential phase(s) of swallowing impairment Stressors Medical /Health Influences Cardiopulmonary stability Nutritional status Immune system Medications Endurance Neurodevelopmental Status Current and anticipated skill levels (communication, gross & fine motor skills) State (infants) Attention span, language, cognitive function Sensorimotor integration problems Temperament or behavior (including feeding refusal, aversion, appetite) Oral Motor Skills Inefficient or abnormal patterns Previous non- & nutritive experiences Previous therapy experiences Caregiver/Family Factors Emotional /economic support systems Educational level Parenting skills, concerns, needs Cultural influences Access to medical services Relationship w/ medical & swallowing and feeding teams Educational/Swallowing and Feeding Team Factors Setting Team members (e.g., type, disciplines, training) Access to and availability of (re)habilitation services Strengths & weaknesses of team or team members Relationship w/ caregivers Individual educational plan goals Other Factors: Ethical Considerations Principles

Past

Current

Appropriate goals ( prognosis and compensatory abilities)

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

Past history. Shortly after birth, Emily was noted to have profound 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 rehabilitation hospital. Emily was also diagnosed with reactive airway disease, moderate obstructive sleep apnea, gastroesophageal reflux, recurrent pneumonia, and an undefined neuromuscular process. At 2 years of 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 and poor 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 35 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 importantly, in response to Emilys 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

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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 need to 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 interventions or other therapeutic procedures must never jeopardize the adequacy of the childs 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 factors affecting the health of their children. However, professionals also have to make decisions based on evidence related to the childs overall status, with safety as the uppermost consideration. The cases described above provide examples for possible decisionmaking 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 1015 min each session, and parents making up the needed volume at home; or (c) continuing to adjust Sammys 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 potential 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 dysphagia 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 illnesses or 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 swallows that may in turn result in prolonged mealtimes and adversely affect the childs 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 childs physician being advised of any changes in condition.

Case 1: A repeat VFSS was requested when Sammy was 9 years old. Mealtimes were taking 4560 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 mashed food 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: Emilys 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 develop more 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 revisions advance trends for mainstreaming medically complex children with swallowing and feeding problems. These changes have resulted 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 students oral, pharyngeal, and laryngeal neuromotor function and control and coordination of respiratory function with swallowing activities. This treatment can (1) facilitate chewing and swallowing safely and efficiently and (2) integrate swallowing function intervention with communication function intervention.

Case 1: Sammys 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

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gastrointestinal tract dysmotility. Early treatment may include feeding tube placement (Moxley & Yurcheshen, 2005). This scenario is particularly interesting because identification of Emilys 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 development followed by an accelerated rate of improvement. Hence, Emilys 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 educational goals will need to be adjusted accordingly. Following the VFSS, Emilys 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 feedings will need to be considered in the context of Emilys progression. 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 childs responses to any kind of oral stimulation / practice must be interpreted by SLPs in order to evaluate the childs status and potential for increased volume of oral intake. Oral stimulation 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 therapeutic 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 available 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 childs 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 volume of oral feeding should be done only with involvement of a physician and dietitian who monitor the childs overall health status and adequacy of nutrition/hydration status. Many children with complex 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 medication, 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. SLPs in 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 appreciated 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 Childrens 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: mlefton@jhmi.edu.

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

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

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Schoolchildren With Dysphagia Associated With Medically Complex Conditions Maureen A. Lefton-Greif, and Joan C. Arvedson Lang Speech Hear Serv Sch 2008;39;237-248 DOI: 10.1044/0161-1461(2008/023) The references for this article include 8 HighWire-hosted articles which you can access for free at: http://lshss.asha.org/cgi/content/full/39/2/237#BIBL

This article has been cited by 5 HighWire-hosted article(s) which you can access for free at: http://lshss.asha.org/cgi/content/full/39/2/237#otherarticles This information is current as of December 1, 2013 This article, along with updated information and services, is located on the World Wide Web at: http://lshss.asha.org/cgi/content/full/39/2/237