PKU watch


Source of feeding difficulty Analysis of each source of feeding difficulty Maternal


Child


Biological/medical Environmental


Food type and accessibility Family environment


Cognitive ability, personality disorders, psychological status and early attachment history, poor maternal eating habits and personal food choices, poor parenting skills, maternal cooking inability


Feeding skills, appetite, temperament, mealtime interactions, food neophobia, food preferences


Health status, appetite regulation, protein substitute, diet composition


Lack of availability of suitable ‘normal’ branded foods, culture, less opportunity to eat outside the home


Low protein food, limited food choice, inappropriate texture of protein substitute (too thick) causing gagging and retching, unattractive food packaging


Extended family, dysfunctional co-parenting, family food preferences, child-feed- ing practices, eating at the table versus eating away from the table, poor family routine, inappropriate cooking facilities, child coercive feeding strategies


Table 1: Potential causes of feeding problems in young children with PKU


requirements and sources of dietary calories in young PKU children. Caregivers rarely comprehend that one third of their child’s energy requirements is likely to come from their protein substitute. They commonly feel that if their child is more interested in playing with food than in eating it, they cannot be consuming enough calories. Even some of the strategies used by caregivers to im-


prove feeding may have the reverse effect. Strategies such as distracting, coaxing, toys, reprimanding, and allowing breaks from eating have been shown to worsen behaviour in over two thirds of children (6). In addition, over control and the use of rewards may also have negative effects.


Strategies to improve feeding


Give caregivers guidance on child feeding development, normal expected feeding behaviour, the importance of hun- ger and satiety cues.


Caregivers should eat with children so positive role modelling can occur and also to promote social interaction (3,2). Eating togeth- er, with at least one suitable low protein shared dish, allows children to observe caregivers trying new foods and helps children and caregivers communicate hunger and satiety, as well as enjoyment of specific foods. Caregivers need to understand the impact of negative role modelling in PKU, particularly if they are negative about any of the low protein diet, refuse to eat or share low protein foods, and eat alternative foods without, at least, a suitable and equivalent alternative for the child with PKU.


Establish consistent and predictable mealtime routines, with mealtime determined by the caregiver and not the child. By develop- ing mealtime routines, caregivers help children learn to anticipate when they will eat. Children should not graze or eat throughout the day, so they are able to develop an appetite before mealtime; the intake of daytime sweetened drinks or low protein milk should be controlled and children should not be fed when they are overly tired and so likely to be uncooperative. Caregivers need to be firm, clear and consistent and expect acceptable behaviour at mealtime. They should be encouraged to enlist the help of the extended family so there is only one unwavering message to the child.


Caregivers should control both the type of food that is offered and the mealtime atmosphere (9). Their task is to ensure that children are offered a suitable and varied low protein diet. Offering a child too many food choices is just too confus- ing and may cause conflict and toddler tantrums.


Caregivers should be provided with easy-to-follow information regarding appropriate food portion sizes for children taking protein substitute with PKU. They should also be given guidance on expected weight gain.


Caregivers should allocate adequate time for mealtime. When mealtimes are less than 10 minutes, children may not have enough time to eat, particularly when they are developing self-feeding skills. Alternatively sitting for more than 20-30 minutes is often difficult and a mealtime may become boring.


If phenylalanine exchanges remain uneaten, it should be replaced with yoghurt or equivalent as an alternative at the end of the meal. With some poor feeders, it may be better to offer them a main course consisting of low phenylalanine foods (free) only and administer the exchanges as part of the dessert. It may take some of the pressure off mealtime.


Increasing familiarity with the taste of a food increases the likelihood of acceptance (1). Caregivers can introduce new foods by giving it together with any preferred food and presenting the new food repeatedly until it is no longer novel.


Caregivers should be discouraged from constantly wiping any food spillage from the child’s face or hands when they are eating. This will interrupt the ‘flow’ and enjoyment of eating.


Administer protein substitute in three equal doses, following the same consistent routine, at the same time each day. The child should always be seated and minimise outside distractions.


Table 2: Strategies to improve feeding in children with PKU 28 NHDmag.com Aug/Sept '10 - issue 57


Strategies to overcome feeding problems As for all childhood feeding problems, in PKU, early behavioural intervention can play an important role in normalising feeding behaviours and mealtime interactions. Any approach to overcoming feeding problems should not only consider the day-to-day practical solutions, but also tackle any psychologi- cal causes of the problem. Many of the approaches used in PKU are similar to the strategies used in healthy children and the caregiver’s attitude, outlook on life and behaviour are central in improving feed- ing behaviour.


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