peg feeding
PEG feeding a child with Smith-Magenis Syndrome: A case study
Emma Coates Senior Paediatric Dietitian Wrexham Maelor Hospital, Betsi Cadwaladr University Health Board, North Wales
Since the 1980s, percutaneous endoscopic gastrostomy (PEG) tubes have become an increasingly common way to provide nutrition support in a huge variety of paediatric patient groups (1) (see table 1). The indications for PEG feeding are as wide ranging as the patient groups they are used in (see Table 1) and PEG fed patients are often a significant part of a general paediatric dietitian’s caseload. Many require ongoing support and monitoring throughout the duration of their episode of PEG feeding. This can vary greatly, with many patients requiring dietetic support for many years, perhaps for life. However, there are many patients who can be successfully weaned from PEG feeding to oral diet, which is discussed in this case study. Jack was transferred to our dietetic department when his family moved to our area at the age of four. He was solely PEG fed at the time of referral. At his previous hospital he had been diagnosed with Smith-Magenis syndrome (SMS), a rare genetic condition caused by a microdeletion or abnormality of
chromosome 17. Patients with SMS may develop distinctive facial features and dental abnormalities are also common. Mild to moderate cognitive disability, delayed speech and language skills, sleep disturbances and behavioural problems (2) are also common. Further details of SMS features can be found in Table 2, many of which have been observed in Jack’s development and behaviour. Feeding problems in infancy are common for SMS patients and Jack had been difficult to feed from birth. He did not latch on particularly well when his Mum attempted to breastfeed him. When bottle feeding was introduced, Jack was slow to feed and he would often cough and splutter during his feeds. He would easily vomit after each feed and he would cry inconsolably after feeds. Mum described reflux/GORD type symptoms during or post feeds. His swallowing ability was assessed during a videofluroscopy. He had poor oro-motor control due to low muscle tone and some aspiration was observed with unthickened formula.
Table 1: Examples of PEG fed patient groups and indications for PEG feeding
Emma has been working as a Paediatric Dietitian for five years and her caseload includes HETF, disability, coeliac disease, cystic fibrosis, PKU and childhood obesity. She has been a local Coeliac UK group organiser for 18 months.
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Patient groups
Indications for PEG feeding
Neurodisability Cardiology Renal Progressive neuromuscular diseases, e.g. Duchene’s muscular dystrophy Cystic fibrosis Short bowel syndrome/Malabsorption, e.g. Crohn’s disease or surgery Oncology Craniofacial abnormalities Allergy Behavioural feeding problems
Unable to achieve and maintain nutritional requirements via oral intake alone leading to faltering growth, this may be due to:
NHDmag.com April 2015 - Issue 103
Physical and cognitive developmental delay Dysphagia or oro-motor difficulties Increased requirements Oral feeding aversion Reflux/GORD Malabsorption Upper GI obstruction/tumours
