1
40
6
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Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.ijporl.2015.11.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2015.11.009</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Otorhinolaryngological, Audiovestibular and swallowing manifestations of patients with Niemann-Pick disease Type C
Publisher
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International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; hearing; dysphagia; priority journal; school child; preschool child; prospective study; human; article; child; female; male; controlled study; clinical article; auditory response; Balance disorders; body equilibrium; endoscopy; Flexible endoscopy; hearing impairment; Hearing problems; Niemann Pick disease/di [Diagnosis]; Niemann-Pick disease; otorhinolaryngology; pure tone audiometry; stabilography; swallowing; Swallowing disorders; vestibular system; feeding difficulties; tone and motor problems; NPC; penetration; aspiration scale; trajectory; characteristics; postural imbalance; dysphagia
Creator
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Senirli R T; Kuscu O; Akyol U; Topcu M; Yigit O; Aksoy S; Demir N
Description
An account of the resource
Objectives: The aim of this study is to evaluate audiovestibular and swallowing impairment of patients with NPC. Methods: Audiovestibular and swallowing evaluation were performed on patients with Niemann-Pick disease type C (NPC) at Hacettepe University between 20013 and 2015 prospectively. Pure-tone audiometry (PTA), Auditory Brain stem response (ABR), Flexible endoscopic evaluation of swallowing (FEES) test and posturography were done. Hearing, swallowing and balance states were measured. Results: There were 16 patients (5 male and 11 female, with a median age of 6.5 years old). The most common ABR abnormalities observed were absent waves I and III (%70 absent I waves, %43.75 absent III waves). Twelve of sixteen patients (%75) had an ABR abnormality in at least one ear, of these, four patients had normal hearing and three of them had periferal hearing loss. 12 (75%) patients had complaint of postural imbalance. 11(69%) of patients had peripheral and one (6%) patient had central impairment. Nine of sixteen patients (56.25%) show some degree of dysphagia (either penetration or aspiration). Two patients (12.5%) showed aspiration both liquid and viscous nutrition. Three patients (18.75%) showed aspiration primarily in liquids and two of them had penetration with viscous nutrition. Three patients (18.75%) had penetration with no aspiration neither liquid nor viscous nutrition (PEN-ASP score was 3, 3, 5, respectively). Conclusion: There is no curative treatment for this devastating and fatal disorder and hearing impairment, balance and swallowing disorders can be seen especially late onset form of disease.
Identifier
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<a href="http://doi.org/10.1016/j.ijporl.2015.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2015.11.009</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Aksoy S
Akyol U
Article
aspiration scale
auditory response
Balance disorders
body equilibrium
characteristics
Child
Clinical Article
Controlled Study
Demir N
Dysphagia
Endoscopy
feeding difficulties
Female
Flexible endoscopy
hearing
hearing impairment
Hearing problems
Human
International Journal of Pediatric Otorhinolaryngology
Kuscu O
Male
Niemann Pick disease/di [Diagnosis]
Niemann-Pick Disease
NPC
Otorhinolaryngology
penetration
postural imbalance
Preschool Child
Priority Journal
Prospective Study
pure tone audiometry
School Child
Senirli R T
stabilography
Swallowing
Swallowing disorders
tone and motor problems
Topcu M
Trajectory
vestibular system
Yigit O
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.ijporl.2012.03.008" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2012.03.008</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Insomnia in Cornelia de Lange Syndrome
Publisher
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International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Pediatrics; Sleep; Otorhinolaryngology; melatonin; smith-magenis-syndrome; Cornelia de Lange Syndrome; Sleepiness; Insomnia; sleep disturbance; sleep disturbance/disorders; De Lange syndrome; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Rajan R; Benke J R; Kline A D; Levy H P; Kimball A; Mettel T L; Boss E F; Ishman S L
Description
An account of the resource
Objective: Up to 55% of patients with Cornelia de Lange Syndrome (CdLS) experience sleep disturbance. Prior evaluation of children without CdLS with similar intellectual disability and self-injurious behavior suggests that sleep disturbances may be related to insomnia or circadian issues. Methods: Caregivers of 31 patients (19 children) with CdLS completed a sleep history questionnaire focused on sleep patterns and evening sleep behavior to screen for signs and symptoms of insomnia and circadian rhythm disorders. Results: The mean age of participants was 14.5 years (range 0.6-37). Major difficulty in falling asleep (75% pediatric, 33% adult) and staying asleep (52% pediatric, 33% adult) was noted. Overall, time to sleep onset was 27.0 +/- 17.6 min, however in those with stated sleep onset difficulty, average time to sleep was 37.8 +/- 16.4 min (p = 0.002). The mean number of pediatric nighttime awakenings was 1.5 overall and 2.1 in those with stated sleep maintenance difficulties versus 0.7 and 1.5 respectively in adults. Children with CdLS tended to fall back asleep slower (61.8 min) than adults (14.9 min), but none of the comparisons between adult and pediatric sleep measures were significant. Greater than half of participants reported a family member with a possible circadian rhythm disorder. Conclusions: Symptoms suggestive of insomnia or circadian rhythm disorder are prevalent in this cohort of children and adults with CdLS. Adults may have less severe symptoms than children, suggesting some improvement over time although this study is underpowered for this analysis. Further studies are necessary to better characterize sleep disturbance in the CdLS population. (C) 2012 Elsevier Ireland Ltd. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.ijporl.2012.03.008" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2012.03.008</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2012
Benke J R
Boss E F
characteristics
Cornelia de Lange syndrome
De Lange syndrome
insomnia
International Journal of Pediatric Otorhinolaryngology
Ishman S L
Kimball A
Kline A D
Levy H P
melatonin
Mettel T L
Otorhinolaryngology
Pediatrics
Rajan R
Sleep
sleep disturbance
sleep disturbance/disorders
Sleepiness
smith-magenis-syndrome
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1177/0003489417723033" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0003489417723033</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Dysphagia in Rett Syndrome: A Descriptive Study
Publisher
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Annals of Otology, Rhinology and Laryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; caregiver; major clinical study; human tissue; complication; prevention; feeding; human; child; female; diagnosis; deterioration; normal human; speech; Rett syndrome; dysphagia; hand movement; otorhinolaryngology; apraxia; bronchitis; drug fatality; neuropsychiatry; psychosexual development; tongue; feeding difficulties; trajectory; characteristics; progressive feeding deterioration
Creator
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Mezzedimi C; Livi W; De Felice C; Cocca S
Description
An account of the resource
Objectives: Rett syndrome (RS) is a neurodevelopmental disorder and the second major cause of mental retardation in females. The aim of this study was to evaluate swallowing problems of RS patients by endoscopic assessment and compile a list of suggestions for managing feeding and preventing complications. Methods: The sample consisted of 61 female patients (mean age = 13.6 years, range, 2-33 years) admitted to the Department of Neuropsychiatry, where they had previously been diagnosed with RS. Speech evaluation associated with observation during mealtimes was useful to formulate suggestions for caregivers. Results: Progressive deterioration of feeding was commonly noted by caregivers. Fifty-four patients had a history of recurrent episodes of bronchitis. Oral apraxia, dyskinetic tongue movements, prolonged oral stage, and poor bolus formation were the most common findings in all patients. Conclusions: Dysphagia was primarily limited to oral preparatory phases, while the pharyngeal phase was normal in most patients. The high percentage of dysphagia suggests the need to accurately monitor the feeding capability of RS children. It is critical to correctly inform caregivers about safe swallowing procedures to reduce the incidence of fatal complications.
Identifier
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<a href="http://doi.org/10.1177/0003489417723033" target="_blank" rel="noreferrer noopener">10.1177/0003489417723033</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Annals of Otology, Rhinology and Laryngology
apraxia
Bronchitis
Caregiver
characteristics
Child
Cocca S
Complication
De Felice C
Deterioration
Diagnosis
drug fatality
Dysphagia
Feeding
feeding difficulties
Female
hand movement
Human
Human Tissue
Livi W
Major Clinical Study
Mezzedimi C
neuropsychiatry
Normal Human
Otorhinolaryngology
Prevention
progressive feeding deterioration
Psychosexual Development
Rett syndrome
Speech
tongue
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/s00455-017-9804-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00455-017-9804-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Dysphagia in Friedreich Ataxia
Publisher
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Dysphagia
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Quality of life; speech; management; Otorhinolaryngology; Swallowing; adults; Gait disorders/ataxia; interrater reliability; molecular-genetics; pathogenesis; pathology; penetration-aspiration scale; Trinucleotide repeat diseases; Videofluoroscopy; feeding difficulties; Friedreich's ataxia; trajectory; characteristics; dysphagia; penetration; aspiration
Creator
An entity primarily responsible for making the resource
Keage M J; Delatycki M B; Gupta I;Corben L A; Vogel A P
Description
An account of the resource
The objective of the study was to comprehensively characterise dysphagia in Friedreich ataxia (FRDA) and identify predictors of penetration/aspiration during swallowing. We also investigated the psychosocial impact of dysphagia on individuals with FRDA. Sixty participants with FRDA were screened for dysphagia using a swallowing quality of life questionnaire (Swal-QOL) and case history. Individuals reporting dysphagia underwent a standardised oromotor assessment (Frenchay Dysarthria Assessment, 2, FDA-2) and videofluoroscopic study of swallowing (VFSS). Data were correlated with disease parameters (age at symptom onset, age at assessment, disease duration, FXN intron 1 GAA repeat sizes, and Friedreich Ataxia Rating Scale (FARS) score). Predictors of airway penetration/aspiration were explored using logistic regression analysis. Ninety-eight percent (59/60) of participants reported dysphagia, of whom 35 (58.3%) underwent FDA-2 assessment, and 38 (63.3%) underwent VFSS. Laryngeal, respiratory, and tongue dysfunction was observed on the FDA-2. A Penetration-Aspiration Scale score above 3 (deemed significant airway compromise based on non-clinical groups) was observed on at least one consistency in 13/38 (34.2%) participants. All of those who aspirated (10/38, 26.3%) did so silently, with no overt signs of airway entry such as reflexive cough. Significant correlations were observed between dysphagic symptoms and disease duration and severity. No reliable predictors of penetration or aspiration were identified. Oropharyngeal dysphagia is commonly present in individuals with FRDA and worsens with disease duration and severity. Individuals with FRDA are at risk of aspiration at any stage of the disease and should be reviewed regularly. Instrumental analysis remains the only reliable method to detect aspiration in this population. Dysphagia significantly affects the quality of life of individuals with FRDA.
Identifier
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<a href="http://doi.org/10.1007/s00455-017-9804-4" target="_blank" rel="noreferrer noopener">10.1007/s00455-017-9804-4</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
adults
aspiration
characteristics
Corben L A
Delatycki M B
Dysphagia
feeding difficulties
Friedreich's ataxia
Gait disorders/ataxia
Gupta I
interrater reliability
Keage M J
Management
molecular-genetics
Otorhinolaryngology
pathogenesis
Pathology
penetration
penetration-aspiration scale
Quality Of Life
Speech
Swallowing
Trajectory
Trinucleotide repeat diseases
Videofluoroscopy
Vogel A P
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.ijporl.2011.07.031" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2011.07.031</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Endoscopic balloon dilatation of esophageal strictures in children
Publisher
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International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Children; Pediatrics; experience; management; Dysphagia; Otorhinolaryngology; atresia; Balloon dilatation; conservative treatment; dilation; epidermolysis bullosa; Esophageal strictures; ingestion; repair; feeding difficulties; surgical intervention; endoscopic balloon dilatation
Creator
An entity primarily responsible for making the resource
Alshammari J; Quesnel S; Pierrot S; Couloigner V
Description
An account of the resource
Aim of the study: To assess the efficacy and safety of endoscopic balloon dilatation of esophageal strictures in children. Material and methods: Design: retrospective case series; population: 49 patients under 18 years of age referred to our center for esophageal strictures; treatment: endoscopic balloon dilatation: outcome parameters: residual dysphagia, weight gain, iatrogenic esophageal perforation, assessment of the esophageal lumen by endoscopy or esophagogram. Results: The three main etiologies were esophageal atresia (49%; n = 24), corrosive injury (25%; n = 12), and epidermolysis bullosa (14%; n = 7), followed by a heterogeneous group of rarer causes (12%; n = 6). The number of dilatations ranged from 1 to 8 sessions per patient (median +/- SEM: 2 +/- 0.3). The length of the follow-up period ranged from 20 to 109 months (median +/- SEM: 40 +/- 4 months). Treatment was successful in 86% of cases (n = 42). Twelve percent of patients (n = 6) had a residual stenosis requiring surgery, and a further one still experienced swallowing difficulties requiring enteral nutrition via gastrostomy in spite of the absence of significant residual stricture. Results were less satisfactory in cases of corrosive injury than with other etiologies. Three esophageal perforations were observed (6% of patients; 2% of procedures). All were medically treated. Conclusions: Endoscopic balloon dilatation is a simple, safe and efficacious treatment of esophageal strictures in children. (C) 2011 Elsevier Ireland Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijporl.2011.07.031" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2011.07.031</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2011
Alshammari J
atresia
Balloon dilatation
Children
conservative treatment
Couloigner V
dilation
Dysphagia
endoscopic balloon dilatation
epidermolysis bullosa
Esophageal strictures
Experience
feeding difficulties
ingestion
International Journal of Pediatric Otorhinolaryngology
Management
Otorhinolaryngology
Pediatrics
Pierrot S
Quesnel S
repair
surgical intervention
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/s00455-014-9587-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00455-014-9587-9</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Co-occurrence of Dystonic and Dyskinetic Tongue Movements with Oral Apraxia in Post-regression Dysphagia in Classical Rett Syndrome Years of Life 1 Through 5
Publisher
An entity responsible for making the resource available
Dysphagia
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Deglutition; disorders; girls; phenotype; dysfunction; mecp2 mutations; Classical Rett syndrome; Dysphagia; Early Pseudostationary stage; Fluoroscopy; genotype; Otorhinolaryngology; Swallowing; Videofluoroscopic study of swallowing; women; feeding difficulties; tone and motor; Rett syndrome; trajectory; characteristics; dysmotility; dystonia; dyskinesia
Creator
An entity primarily responsible for making the resource
Abraham S S; Taragin B; Djukic A
Description
An account of the resource
We do not know the natural history of dysphagia in classical Rett syndrome (RTT) by stage or age. This study investigated swallowing physiology in 23 females ages 1:7 to 5:8 (years, months) with classical Rett syndrome to determine common and distinguishing features of dysphagia in post-regression early Pseudostationary Stage III. In-depth analysis of videofluoroscopic swallowing studies (VFSS) found dysmotility of oral stage events across subjects implicating oral apraxia. Impaired motility was further compromised by recurrent dystonic and dyskinetic movements that co-occurred with oral apraxia during oral ingestion in 78 % (n = 18) of the subjects with RTT. Of this group, 44 % displayed rocking and/or rolling lingual pattern, 56 % had recurrent oral tongue retroflexions, and/or elevated posturing of the tongue tip, and, 72 % displayed multi-wave oropharyngeal transfer pattern. The proportion of subjects whose swallowing motility was disrupted by aberrant involuntary tongue movements did not differ significantly between bolus types (liquid, puree, and solid) trialed. Liquid ingestion was significantly more efficient in subjects using bottles with nipples than their counterparts who used spouted or straw cups. Dystonic and dyskinetic tongue movements disrupted liquid ingestion in subjects using cups with spouts or straws significantly more than those using bottles. Analysis of food ingestion revealed that significantly more subjects were able to orally form, transport, and transfer a puree bolus into the pharynx than they were a solid bolus. A significantly larger number of subjects aspirated and penetrated liquid than they did puree or solid. No significant relationship was found between subjects with airway contamination and those with dystonic and dyskinetic tongue movements. Subjects' rocking and rolling lingual patterns were consistent with those evidenced in adults with Parkinson's disease. Subjects' tongue retroflexions were classified as provisionally unique to RTT. VFSS pre-planning, fluoroscopic procedures, and therapeutic strategies specific to this specialty population were derived.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00455-014-9587-9" target="_blank" rel="noreferrer noopener">10.1007/s00455-014-9587-9</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Abraham S S
characteristics
Classical Rett syndrome
Deglutition
Disorders
Djukic A
dysfunction
Dyskinesia
dysmotility
Dysphagia
Dystonia
Early Pseudostationary stage
feeding difficulties
Fluoroscopy
Genotype
girls
mecp2 mutations
Otorhinolaryngology
Phenotype
Rett syndrome
Swallowing
Taragin B
tone and motor
Trajectory
Videofluoroscopic study of swallowing
Women