Feeding difficulties in children with inherited metabolic disorders: a pilot study

In children with inherited metabolic disorders (IMD), feeding difficulties are often assumed to be inherent, although there is little evidence describing their frequency or severity. The present study aimed to describe feeding patterns/difficulties among children with IMD on protein-restricted diets from one centre.

Data from an observational, pilot study of 20 IMD children, nine females (median age, 2.7 years; range, 1-6 years) were compared with data obtained from a retrospective historical group of 15 healthy children (HC), 12 females, aged 1-5 years (median 3.0 years). Caregivers completed a feeding assessment questionnaire, and three separate video recordings were taken of each child eating at home.

The main feeding problems identified by the caregivers' questionnaire in the IMD group (compared to HC) were: poor appetite (55% versus 7%; P = 0.004), limited food variety (55% versus 27%; P = 0.04) and lengthy mealtimes (70% versus 20%; P = 0.006). During mealtimes, children from the IMD group were more likely to vomit, exhibit negative behaviour, get distracted and self-feed less often. From video recordings of meals, although the median meal duration was similar for the two groups (18 min IMD versus 16 min HC), the HC ate twice the quantity of food (3.4 mouthfuls min(-1) versus 1.5 mouthfuls min(-1) ; P < 0.001). During mealtimes, IMD caregivers were less likely to talk to their children (median parent to child communications: IMD group, seven in 10 min; HC, 17 in 10 min). Eighty-three percent of IMD children regularly ate alone.

In children with IMD on protein restrictions, severe feeding difficulties were common. Caregivers need to focus more attention on the social aspects of feeding. Further larger scale studies are required.