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Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterised by differences in social communication and behaviour. Up to 89% of autistic children have feeding difficulties that can potentially impact their nutrition and overall health. Research has shown that these feeding and resulting mealtime difficulties can also create stress for caregivers and other family members. However, little is known about how autistic children's feeding difficulties impact social participation for them, and their families, in life activities at home, school, and in the community. The underlying causes for feeding difficulties in autistic children have been well researched. It is common for autistic children to process the taste and smell of food differently; therefore, their preference for sameness (e.g., predictable textures and flavours) can result in a restricted diet. Likewise, some autistic children's need for sameness can in turn result in strong desires for mealtimes to occur with the same feeding equipment, seating, and even locations with any changes to these factors potentially increasing their mealtime refusal behaviours. Autistic children's differences in sensory processing for foods have been linked with their interoception levels and differing appetite cues around hunger levels for mealtimes. Their sensory processing can also influence their ability to cope with excessive sensory information in some environments. Which can lead to some individuals preferring a quieter space to eat alone rather than with a group of people. Studies have also shown that for caregivers, their autistic children's mealtime refusal, along with well-meaning health professional expectations around nutrition, can impact their own stress levels which in turn impacts their quality of life. Despite the research to date, the relationship between autism characteristics, sensory profiles, and their relationship to autistic children's feeding difficulties has not been thoroughly explored, Thesis (Masters), Master of Medical Research (MMedRes), School of Pharmacy & Med Sci, Griffith Health, Full Text

Pierre Robin sequence is a congenital disorder classically characterized by retrognathia, glossoptosis and upper airway obstruction with or without cleft palate. This condition affects neonates and can cause serious respiratory and feeding difficulties requiring prompt intervention. Currently there are no standardized management algorithms for neonates with Pierre Robin sequence and management of the condition remains a challenge. Assuring adequate breathing and feeding should always be the first point of concern. Early diagnosis, sequential planning of treatment, adequate monitoring and multidisciplinary approach are essential for infants referred with Pierre Robin sequence. We discuss here the full scope of the disease and the various management options.

Aim To describe parents of extremely preterm children experiences regarding feeding of their children during the first 3 years of the child's life. Methods This is a qualitative study involving interviews conducted with 12 parents of nine children who had been cared for at one neonatal intensive care unit in Sweden. The interviews were conducted between May and September 2018; the data were analysed using qualitative content analysis. Results All parents experienced some difficulties with their child's eating development and described feeding their child as sometimes both difficult and frustrating. Variation in when these difficulties arose made it hard for the parents to obtain the individual support they wanted and needed. Parents experienced a need for more support - from both staff members and parents with similar experiences - during and after their child's stay at the NICU. Conclusion All parents participating in the study experienced difficulties during some phase of their child's feeding development. They expressed the need for more specialised support both during and after their child's time at the hospital.

Silver-Russell syndrome (SRS) is an imprinting disorder characterized by prenatal and postnatal growth retardation, relative macrocephaly, feeding difficulties and body asymmetry. Recently, upd(20)mat has been identified in few patients with SRS-like features, suggestive of a new imprinting disorder characterized by prenatal and postnatal growth failure. Here, we describe two male patients with upd(20) and feeding difficulties, prenatal and postnatal growth retardation and normal cognitive development. During pregnancy, confined placental mosaicism for trisomy 20 was detected in one of the patients but was not investigated further until identification of upd(20)mat in the neonatal period. To evaluate whether upd(20)mat should be part of the first trier genetic diagnostic in patients with growth retardation, we screened a large cohort of patients (n = 673) referred to our laboratories for SRS-testing without detecting any upd(20). Our results, along with the existing evidence, indicate that upd(20)mat is a very rare cause of growth retardation, but should be followed up when confined placental mosaicism for trisomy 20 mosaicism is observed during pregnancy.

The objectives of this study were to describe the feeding practices of parents who have children in early childhood, as well as to compare those parents of children with and without feeding difficulties (FD). Participants were 93 fathers/mothers between 20 and 44 years old, 33 of them had children with FD. The fathers/mothers completed the feeding section of the Parenting Practices Questionnaire to promote Early Childhood Health Habits (PCHS, for its acronym in Spanish), which assess responsive, non-responsive, indulgent and negligent practices; in addition, they answered eight questions aimed at investigating the context of child feeding. Most of parents reported using responsive practices (monitoring, setting limits and modeling); however, parents of children with FD also highlighted the use of non-responsive practices (e.g., pressure or nagging their children to eat), indulgences (e.g., feeding the child in the place the child chooses) and negligent (e.g. leave the child alone at the time of eating). The results base that interaction in feeding situations is as important as the quality and quantity of food consumed by the child, making it possible to visualize the problem of FD in early childhood., Los objetivos de este estudio fueron describir las prácticas de alimentación de padres que tienen hijos en la primera infancia, así como comparar entre aquellos padres de hijos con y sin dificultades de alimentación (DDA). Participaron 93 padres/madres de entre 20 y 44 años de edad, 33 de los cuales tenían hijos con DDA. Los padres/madres completaron el apartado de alimentación del Cuestionario de Prácticas de Crianza para promover Hábitos de Salud en la primera infancia (PCHS), que evalúa las prácticas responsivas, no responsivas, indulgentes y negligentes; además de ocho preguntas dirigidas a indagar el contexto de alimentación del niño. La mayoría de los padres reportó utilizar prácticas responsivas (monitoreo, establecimiento de límites y modelamiento); sin embargo, en los padres de niños con DDA además destacó el empleo de prácticas no responsivas (e.g., presionar o regañar al niño para que coma), indulgentes (e.g., darle la comida en el lugar que el niño elija) y negligentes (e.g. dejar solo al niño al momento de comer). Los resultados fundamentan que la interacción en las situaciones de alimentación es tan importante como la calidad y cantidad de alimentos que el niño consume, permitiendo visibilizar la problemática de las DDA en la primera infancia.

Craniofacial microsomia (CFM) is characterized by underdevelopment of the structures derived from the first and second pharyngeal arches resulting in aesthetic, psychological, and functional problems including feeding and swallowing difficulties. The aim of this study is to gain more insight into swallowing difficulties in patients with CFM. A retrospective study was conducted in the population of patients diagnosed with CFM at three major craniofacial units. Patients with feeding difficulties and those who underwent video fluoroscopic swallow (VFS) studies were included for further analyses. The outcome of the VFS-studies was reviewed with regard to the four phases of swallowing. In our cohort, 13.5% of the 755 patients were diagnosed with swallowing difficulties. The outcome of the VFS-studies of 42 patients showed difficulties in the oral and pharyngeal phases with both thin and thick liquids. Patients with more severe mandibular hypoplasia showed more difficulties to form an appropriate bolus compared to patients who were less severely affected. This is the first study to document swallowing problems in patients with CFM. Difficulties were seen in both the oral and pharyngeal phases. We recommend routine screening for swallowing issues by a speech and language therapist in all patients with CFM and to obtain a VFS-study in patients with a type III mandible.

Många kvinnor betraktar amning som det naturligaste sättet att ge sitt nyfödda barn föda. Mödrar får information av sjukvården att bröstmjölk innehåller all näring som det nyfödda barnet behöver samt antikroppar som skyddar barnet mot de vanligaste barnsjukdomarna. Det är inte alla kvinnor som kan amma i dagens samhälle och detta kan leda till att känslor väcks hos den nyblivna mamman som under graviditeten tänkt amma men som sedan inte kunnat göra det. Syftet med studien var att utifrån bloggtexter beskriva mödrars upplevelser av amningssvårigheter under de första sex månaderna efter barnets födelse. Studien har en kvalitativ metod med en induktiv ansats. Data samlades in genom blogginlägg samt kommentarer från femton olika bloggar och analyserades sedan med hjälp av en kvalitativ innehållsanalys. I resultatet framkom två kategorier: ”Leva upp till samhällets normer och attityder” samt ”Det professionella stödet i amningsrådgivning”. Kategorierna bildade sedan temat: ”Mödrars kamp att kunna balansera krav och förväntningar på amningen”. Utifrån denna studie kan personal som arbetar med mödrar och amningsrådgivning på olika vårdenheter, få ökad kunskap om hur mödrar upplever amningssvårigheter. Studien kan ligga till grund för ändrade vårdrutiner samt att patientsäkerheten ökas. Det i sin tur kan bidra till att mödrar upplever mindre lidande i möte med hälso- och sjukvården., Many women consider breastfeeding as the most natural way to give their newborn child nutrition. Mothers receive information from medical staff that breast milk contains all the nutrients that the infant needs and antibodies that protect the baby against common childhood diseases. Not all women can breastfeed in today's society and that could wake feelings in mothers that during the pregnancy has been thinking to breastfeeding but who involuntarily have been unable to do so. The aim of the study was to with blog texts describe mother’s experiences of breastfeeding difficulties in the first six months following the birth. The study was based on a qualitative approach with an inductive approach. Data were collected through blog posts and comments from fifteen different blogs and then analysed using qualitative content analysis. The results are based on two categories: “Living up to the norms and attitudes” and “Professional support in breastfeeding consulting”. These categories formed a theme: “Mothers struggle to balance between the requirements and expectations of breastfeeding”. Based on this study, the staff who work with mothers and breastfeeding consulting on various health care units enhance the understanding of how mothers experiencing breastfeeding difficulties. This furthermore could contribute to mother´s experiencing less distress interaction with health and medical care.

Många kvinnor betraktar amning som det naturligaste sättet att ge sitt nyfödda barn föda. Mödrar får information av sjukvården att bröstmjölk innehåller all näring som det nyfödda barnet behöver samt antikroppar som skyddar barnet mot de vanligaste barnsjukdomarna. Det är inte alla kvinnor som kan amma i dagens samhälle och detta kan leda till att känslor väcks hos den nyblivna mamman som under graviditeten tänkt amma men som sedan inte kunnat göra det. Syftet med studien var att utifrån bloggtexter beskriva mödrars upplevelser av amningssvårigheter under de första sex månaderna efter barnets födelse. Studien har en kvalitativ metod med en induktiv ansats. Data samlades in genom blogginlägg samt kommentarer från femton olika bloggar och analyserades sedan med hjälp av en kvalitativ innehållsanalys. I resultatet framkom två kategorier: ”Leva upp till samhällets normer och attityder” samt ”Det professionella stödet i amningsrådgivning”. Kategorierna bildade sedan temat: ”Mödrars kamp att kunna balansera krav och förväntningar på amningen”. Utifrån denna studie kan personal som arbetar med mödrar och amningsrådgivning på olika vårdenheter, få ökad kunskap om hur mödrar upplever amningssvårigheter. Studien kan ligga till grund för ändrade vårdrutiner samt att patientsäkerheten ökas. Det i sin tur kan bidra till att mödrar upplever mindre lidande i möte med hälso- och sjukvården., Many women consider breastfeeding as the most natural way to give their newborn child nutrition. Mothers receive information from medical staff that breast milk contains all the nutrients that the infant needs and antibodies that protect the baby against common childhood diseases. Not all women can breastfeed in today's society and that could wake feelings in mothers that during the pregnancy has been thinking to breastfeeding but who involuntarily have been unable to do so. The aim of the study was to with blog texts describe mother’s experiences of breastfeeding difficulties in the first six months following the birth. The study was based on a qualitative approach with an inductive approach. Data were collected through blog posts and comments from fifteen different blogs and then analysed using qualitative content analysis. The results are based on two categories: “Living up to the norms and attitudes” and “Professional support in breastfeeding consulting”. These categories formed a theme: “Mothers struggle to balance between the requirements and expectations of breastfeeding”. Based on this study, the staff who work with mothers and breastfeeding consulting on various health care units enhance the understanding of how mothers experiencing breastfeeding difficulties. This furthermore could contribute to mother´s experiencing less distress interaction with health and medical care.

Objectives: We developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.Methods: Initial draft recommendations were created based upon literature review and 34 open-ended questions in which the literature was lacking. Statements and questions were made available to an international, multidisciplinary panel of clinicians in an online format and a Microsoft Word–formatted version of the draft via e-mail. Input was sought using a 2-stage modified Delphi process to reach consensus. Items included clinical assessment of growth, anthropometry, feeding difficulties and management to increase energy intake, decrease feeding difficulties, and consideration of gastrostomy.Results: Agreement was achieved on 101 of 112 statements. A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs. A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice. Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.Conclusions: These evidence- and consensus-based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.

The aim of the study was to conduct a survey using a dedicated questionnaire to assess feeding difficulties and weight gain in a population of 122 Spinal Muscular Atrophy (SMA) type II patients, aged between 1 and 47 years. All the answers were entered in a database and were analysed subdividing the cohort into age groups (1-5, 6-10, 11-14, 15-19, 20-29, and 30-50 years). Six out of our 122 patients (5%), all younger than 11 years, had weights more than 2SD above the median for age matched controls, whilst 45 (37%) had weights less than 2SD below the median. Chewing difficulties were reported in 34 of the 122 patients (28%) and limitation in the ability to open the mouth in 36 (30%) and both were increasingly more frequent with age. Swallowing difficulties were reported in 30 patients (25%). The results of our survey suggest that a number of patients with SMA type II have limited jaw opening, and chewing and swallowing difficulties. Our findings raise a few issues concerning standards of care that should be implemented in the monitoring and management of feeding difficulties and weight gain. © 2008 Elsevier B.V. All rights reserved.

Feeding difficulties are known to occur with advancing age in Duchenne muscular dystrophy (DMD). We evaluated the role of videofluoroscopy swallow study (VFSS) in a group of 30 DMD patients with feeding difficulties. Indications for feeding assessment were: respiratory infections potentially attributable to aspiration (n=10) and/or episodes of choking (n=24) subdivided into isolated choking events (n=8) and regular choking during swallowing (n=16). Indications for assessment were analysed in relation to the VFSS results. Median age at assessment was 17.13 years (range 6-31.4). Twenty-four VFSS were performed. Prolonged chewing and effortful bolus transport for solids increased with age. Swallow trigger was normal in the majority of cases. All patients had some post-swallow pharyngeal residue around the laryngeal inlet increasing in volume with age. Although this residue did not result in aspiration, it was worse in patients that were frequently choking. Three patients intermittently had penetration of the supraglottic space that did not reach the vocal folds during the swallow. Our results suggest that reported swallowing problems when assessed are not always associated with difficulties on VFSS. It is the oral phase of swallowing that is most significantly affected in DMD. The pharyngeal phase is well triggered but is weak with incomplete pharyngeal clearance leaving pharyngeal residue. Insufficient or effortful chewing coupled with weak clearance may predispose them to choking episodes either as a one off event or with increasing frequency with age. This study suggests that VFSS may not be of additional benefit to careful feeding history and observation in DMD with feeding difficulties. © 2007 European Paediatric Neurology Society.

The aim of the study was to conduct a survey using a dedicated questionnaire to estimate feeding difficulties, gastrointestinal involvement and weight gain in a population of 118 Duchenne muscular dystrophy (DMD) patients (age range 13.80-35.8 years). All the answers were entered in a database and the data analysed subdividing the cohort into age groups (3-9, 9-13, 13-18, 18-24, 24-30, 30-36 years). The results indicate that chewing difficulties are frequent and become increasingly present with age, associated with a progressive increase of the duration of meals. Episodes of choking or other clinical signs of swallowing difficulties are in contrast much less frequent even after age 18. Aspiration pneumonia were also not very frequent and only occurred in 7/118. Clinical signs of gastroesophageal reflux requiring treatment were only found in 5 while 43/118 complained of constipation requiring treatment. Very few of our patients had their weight above 2 SD (n = 4) and this was always found in patients between 9 and 18 years while after this age there was an increasing number of patients with weight below 2 SD. The results of our survey suggest that although choking is one of the most feared complications in patients with DMD, clinical signs of swallowing abnormalities are infrequent when collecting clinical information retrospectively. Further studies using an objective evaluation such as videofluoroscopy are needed to identify minor signs that may not be obvious on clinical examination. © 2006 European Paediatric Neurology Society.