Pocketing of food in cheeks during eating in an adolescent with <scp>CHARGE</scp> syndrome

We would like to draw your attention to a problematic feeding behaviour that has not previously been described in CHARGE syndrome. A 17-year-old female adolescent with a confirmed genetic diagnosis of CHARGE syndrome and many of the typical physical features of the genetic disorder (Table 1) presented to her general paediatrician's clinic with problems of over-stuffing her mouth and holding food in her cheeks during eating, which had led to choking incidents. The adolescent had experienced choking episodes during eating several times a year and had two severe choking episodes during her life that required the Heimlich maneuver to dislodge food. Hsu et al. 20141 Frequency (%) Yes (atresia, unilateral) (stenosis, unilateral) Yes (CNI – difficulty smelling; CNVII – facial palsy; CNVIII – hearing problems; CNIX, X, I – swallowing problems) Past medical history revealed that she was tube-fed until 13 years of age. Oral feeding was introduced at the age of 3 years. She continuously over-stuffed her mouth with all food textures and would pocket the food both in her cheeks and palate. Previous swallow studies had identified an unusual chewing pattern and uncoordinated swallow pattern where she double or triple swallowed for every bite. The adolescent needed close supervision, as well as a continuous reminder to chew and swallow, at each meal. The adolescent had extensive feeding therapy over her life, which included a speech language pathologist, occupational therapist and psychologist, but it did not successfully resolve her food pocketing feeding behaviour. Pocketing of food in cheeks or food packing has been described in the current literature as holding accepted food in the mouth without swallowing.2, 3 This eating behaviour has previously been described in children with autism.3 Feeding and swallowing problems are seen in many (>70%) infants with CHARGE syndrome, and of these, the majority have to be tube fed at some point. Many feeding issues seen in CHARGE syndrome such as problems with chewing, swallowing, reflux and aspiration may be due to cranial nerve dysfunction1, 4. Chaser use, food re-distribution and manipulation of food textures have been described in the literature as beneficial ways to reduce food pocketing in children with autism.2, 3 This is the first case to document food pocketing in an individual with CHARGE syndrome. It is important that feeding team therapy members and clinicians are aware of such eating behaviours in individuals with CHARGE syndrome, in addition to the already well-established physical features and symptoms of the syndrome. Clinicians should specifically target feeding therapy interventions to address food pocketing, as this feeding behaviour can still persist despite extensive general feeding therapy. We thank the patient and her mother for sharing their lives with us.

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