Department of Metabolic Diseases, Beatrix Children's Hospital, University Medical Centre Groningen, University of Groningen, Groningen, the Netherlands.
Department of Pediatric Gastroenterology Hepatology and Nutrition, Beatrix Children's Hospital, University Medical Centre Groningen, University of Groningen, Groningen, the Netherlands.
J Inherit Metab Dis. 2021 May;44(3):693-704. doi: 10.1002/jimd.12339. Epub 2020 Dec 21.
There is paucity of literature on dietary treatment in glycogen storage disease (GSD) type IV and formal guidelines are not available. Traditionally, liver transplantation was considered the only treatment option for GSD IV. In light of the success of dietary treatment for the other hepatic forms of GSD, we have initiated this observational study to assess the outcomes of medical diets, which limit the accumulation of glycogen. Clinical, dietary, laboratory, and imaging data for 15 GSD IV patients from three centres are presented. Medical diets may have the potential to delay or prevent liver transplantation, improve growth and normalize serum aminotransferases. Individual care plans aim to avoid both hyperglycaemia, hypoglycaemia and/or hyperketosis, to minimize glycogen accumulation and catabolism, respectively. Multidisciplinary monitoring includes balancing between traditional markers of metabolic control (ie, growth, liver size, serum aminotransferases, glucose homeostasis, lactate, and ketones), liver function (ie, synthesis, bile flow and detoxification of protein), and symptoms and signs of portal hypertension.
关于糖原贮积病(GSD)IV 型的饮食治疗,文献资料匮乏,也没有正式的指南。传统上,肝移植被认为是 GSD IV 的唯一治疗选择。鉴于饮食治疗对其他肝型 GSD 的成功,我们开展了这项观察性研究,以评估限制糖原积累的医学饮食的治疗效果。现介绍三个中心的 15 例 GSD IV 患者的临床、饮食、实验室和影像学数据。医学饮食可能具有延迟或预防肝移植、改善生长和使血清转氨酶正常化的潜力。个体化治疗计划旨在避免高血糖、低血糖和/或酮症,以分别最小化糖原积累和分解代谢。多学科监测包括平衡传统的代谢控制标志物(即生长、肝大小、血清转氨酶、葡萄糖稳态、乳酸和酮体)、肝功能(即合成、胆汁流量和蛋白质解毒)以及门脉高压的症状和体征。