Ernährungsprobleme und Unterernährung bei schwer neurologisch beeinträchtigten Kindern und Jugendlichen

Claßen, Martin; Schmidt‐Choudhury, Anjona

doi:10.1007/s00112-019-0726-0

Cited by 6 publications

(6 citation statements)

References 51 publications

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“…1 GI symptoms, such as impaired swallowing, GERD, and constipation, are common in neurologically impaired children. 5 Here, we report episodes of spasmodic abdominal pain and restlessness in our three patients with PCH2. Spasmodic pain severely aggravated their condition and especially their movement disorder which sometimes developed into a choreatic crisis or dystonic opisthotonos.…”

Section: Discussionmentioning

confidence: 62%

Spasmodic Abdominal Pain and Other Gastrointestinal Symptoms in Pontocerebellar Hypoplasia Type 2

et al. 2021

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Introduction Pontocerebellar hypoplasia type 2 (PCH2) is a rare neurodevelopmental disease with a high disease burden. Besides neurological symptoms, somatic symptoms, such as gastroesophageal reflux (GERD) and failure to thrive, are major contributors to this burden. Methods We report three patients with genetically confirmed PCH2A and significant gastrointestinal (GI) symptoms. Results Apart from impaired swallowing and GERD, which are frequently reported in patients with PCH2, all three patients suffered from episodes of spasmodic abdominal pain and restlessness. In one severely affected patient, lack of intestinal alkaline phosphatase (IAP) is demonstrated. Conclusion GI symptoms are common in PCH2. We draw attention to episodes of spasmodic abdominal pain seriously, aggravating the condition of the patients, especially their movement disorder, and discuss the role of IAP.

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Section: Discussionmentioning

confidence: 62%

Spasmodic Abdominal Pain and Other Gastrointestinal Symptoms in Pontocerebellar Hypoplasia Type 2

et al. 2021

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“…Good networking and exchange between the numerous medical institutions and professionals involved are essential, always adapted to the local settings and resources available. 22,37 The ESPGHAN workgroup suggests that nutritional evaluation and management should be performed by a multidisciplinary team, ideally including a physician, dietitian, nurse, speech therapist, physical therapist, psychologist, and occupational therapist" 20 -this ideal setting was not met by many of the respondents' facilities: while physicians and nurses were present most frequently, the other subspecialties were far less common. Especially psychologists and occupational therapists were available only in about half of the settings.…”

Section: Discussionmentioning

confidence: 99%

“…Some practical advice and summaries in English as well as in German emerged from this article. 11,21,22 In 2019-2020, a "survey of practice" was conducted by the same study group and published in 2021, examining the "current clinical practice, also with respect to the ESPGHAN recommendations, and the knowledge and awareness of health care professionals dealing with these patients on gastrointestinal consequences of neurological impairment (NI) and their nutritional management." 23 In this study, the questionnaire had been distributed only among ESPGHAN members via the newsletter, and three quarters of respondents were aware of the ESPGHAN guidelines; however, significantly fewer found them helpful and adhered to them.…”

Section: Introduction/backgroundmentioning

confidence: 99%

Nutritional Management in Children and Adolescents with Severe Neurological Impairment—Who Cares? A Web-Based Survey Among Pediatric Specialists in Germany

Hommel,

Lücke,

Schmidt-Choudhury

2023

Neuropediatrics

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Background Nutritional management of children and adolescents with severe neurological impairment (SNI) is challenging. A web-based survey was distributed to identify the present situation and the knowledge of the involved medical professionals in Germany. Methods The survey was created with LimeSurvey, and access data were distributed by several medical societies. Eighty-three questions covered four topics: “general information,” “gastro- and jejunostomy procedure,” “handling of gastrostomies and feeding tubes,” and “nutritional management and follow-up of children and adolescents with SNI.” A descriptive analysis was performed with Microsoft Excel. Results A total of 156 participated (65 completed and 91 partially), 27% being pediatric gastroenterologists, 23% pediatric neurologists, and 10% pediatric surgeons. The most common indications for gastrostomy and tube feeding were oropharyngeal dysfunction and failure to thrive. Many patients were still underweight after some months of enteral feeding. The procedure of gastrostomy and handling recommendations varied broadly. Frequently, standard operating procedures (SOPs) and written local guidelines did not exist, and there was a considerable request for training. Only 53% of participants were aware of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition position paper published in 2017, even fewer (38%) followed the guidelines. The recommended measures to assess a nutritional status were often not respected. Conclusion Nutritional management of children and adolescents with SNI in Germany is still strongly deficient. Despite the international guideline of 2017, few colleagues are aware of and adhere to the recommendations. This could be improved by interdisciplinary teaching and evaluation of the reasons for noncompliance. The procedure of gastrostomy and the patients' follow-up vary widely. Therefore, modified SOPs should be developed.

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“…The causes of dysphagia in children often differ from those seen in adult patients. Diagnosis and management of dysphagia must be tailored to the clinical characteristics of the individual patient [ 26 , 41 , 42 ].…”

Section: Disorders In the Acquisition Of Eating Skills / Dysphagiamentioning

confidence: 99%

Development of eating skills in infants and toddlers from a neuropediatric perspective

Kalhoff,

Kersting,

Sinningen

et al. 2024

Ital J Pediatr

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Early infant feeding and swallowing are complex motor processes involving numerous muscles in coordination, e.g. the orofacial muscles as well as the muscles of the pharynx, larynx and esophagus. The newborn’s reflexive drinking develops into the ability to ingest pureed complementary food as infancy progresses. Finally, in the last part of the first year of life, a differentiated eating, chewing and swallowing process develops allowing the voluntary intake of different foods of the family diet. The dietary schedule for the first year of life, which describes the recommended nutrition of infants in Germany, corresponds to these milestones in eating development. Disturbances in gross motor development, sensory processing issues, and organic and behavioral problems are known to interfere with the development of eating skills. Swallowing disorders (dysphagia) in children can have a detrimental effect on food intake and pose a serious risk to growth and development. Their prevention treatment requires a multidisciplinary approach with the aim of enabling the child to eat independently in the long term.

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Ernährungsprobleme und Unterernährung bei schwer neurologisch beeinträchtigten Kindern und Jugendlichen

Cited by 6 publications

References 51 publications

Spasmodic Abdominal Pain and Other Gastrointestinal Symptoms in Pontocerebellar Hypoplasia Type 2

Spasmodic Abdominal Pain and Other Gastrointestinal Symptoms in Pontocerebellar Hypoplasia Type 2

Nutritional Management in Children and Adolescents with Severe Neurological Impairment—Who Cares? A Web-Based Survey Among Pediatric Specialists in Germany

Development of eating skills in infants and toddlers from a neuropediatric perspective

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