The following article is reprinted with permission from the National PKU News, Vol. 7, No. 3., Winter 1996. Although written specifically for the PKU population, the article has much good advice for those dealing with MSUD diets. Just think MSUD instead of PKU.
Ask any parent what the greatest challenge of the PKU diet is and the likely answer will be "the medical food." Some children may begin to refuse the "milk" from an early age. The problem may last only a few days, or can go on for a long time. The struggle that begins can negatively affect relationships between parents and other family members as well as the child's metabolic control. To help families with this and other compliance problems, we invited Dr. David Pelcovitz, Chief of Child and Adolescent Psychology at Cornell University Medical College to speak to our Metabolic Center parent support group at North Shore University Hospital in Manhasset, New York. We later put the ideas into a paper from which this article is drawn.
(Pelcovitz, D., and Goldberg, T., Enhancing nutrition compliance in children: Inborn errors of metabolism as a paradigm. Topics in Clinical Nutrition, 10 (2): 73-81, 1995.)
To prevent power struggles over feeding, parents should have an attitude of calm control. But this is not easy when managing children with PKU. All parents know that not following the diet can lead to serious consequences. This makes it difficult for parents and other care givers to take a "low-key" approach when the medical food or other foods are refused. Also, most problems related to poor compliance are not seen immediately, adding to the difficulty. For children, who by nature think in concrete terms, the lack of immediate feedback is especially difficult. In this article, we will make specific recommendations to help diet compliance.
When the child begins to eat table foods, the diets of children with PKU noticeably differ from those found in normal meal patterns. Not only must they drink adequate amounts of the medical food, but they must avoid eating many of the foods eaten by family and friends. Although there are a variety of modified foods, their appearance and taste can differ somewhat from those of their regular counterparts.
The potential for noncompliance begins when children reach an age where they start to have a say in what they eat. It is very normal for toddlers to get into power struggles. At this age, almost all parents report significant problems in properly managing their child's diet. In a European study of eleven children with PKU, parents ranked the diet as their most difficult problem. At our metabolic center, eight out of ten families of toddlers report becoming involved in intense struggles with their children over drinking the medical food. Feeding problems in these children have been reported as early as eighteen months of age.
Children of that age typically are dealing with their beginning independence. It is not surprising that the child with PKU may now begin to refuse to drink the medical food. Families may use various techniques to help this problem, including concentrating the medical food, flavoring it, using reward systems, etc. Battles may continue for days or weeks at a time, occasionally ending in forced feeding or noncompliance. At this age, there is also increased exposure to table foods, providing more opportunities for power struggles over what and how much is eaten.
Don't be overindulgent
Parents may have strong emotions due to having a child with a metabolic disorder. These emotions may include feelings of guilt or pity because of diet restrictions. The feelings may result in parents having difficulty setting limits. Remember that the youngster you are dealing with is a child first, and a "patient" second! The scientific literature on children with chronic conditions describes the danger of responding to them by becoming more indulgent, or by placing fewer demands on them. A cycle may be set in motion. The child wants to gain reassurance that he or she is like everybody else and tries to get care givers to "normalize" disciplinary practices. This would prove the child is no different from siblings or friends.
For the child with PKU, eating is often the arena where such battles are fought. As a parent, you may need help getting in touch with underlying feelings of guilt and self-blame and in finding positive way of dealing with them. Do not apologize for the restrictions to your child or to others in the presence of your child. Recognize that consistent regulation of your child's diet is an act of love, even in the face of tears and angry rejections.
A related problem is the tendency for some parents and care givers to encourage unusually high levels of dependency in the child. Concerns related to possible consequences of having PKU often result in overprotectiveness. Children with PKU have been shown to be more dependent than non-PKU adolescents. Although the high levels of concern are understandable, these feelings may set the stage for heightened rebellion. Conflicts over diet limits are a likely battleground in the struggle of the overprotected child to reach independence. The important thing is not to "baby" your child. Toddlers should be weaned to a cup, be expected to self-feed and be treated at the table in a way that is appropriate for the child's age.
Avoid power struggles
Recent research, including children with diabetes, shows that when parents display a high level of expressed emotion there is more likely to be poor diet compliance. Examples of "expressed emotion" are criticism, overprotectiveness and intrusiveness. But when care givers dealing with the children are helped to become more calm, consistent and supportive, the situation improves. Unfortunately, having a child who can have serious problems because of diet noncompliance is a situation that can easily lead to high levels of expressed emotion. For healthy children, guidelines for eating are straightforward. Power struggles are avoided by care givers taking responsibility for when and what the child eats, but the child taking responsibility for how much and even whether he or she eats. Care givers of young children with PKU cannot afford the luxury of their children deciding the quantity or even the timing of the food they consume.
Recommendations for Improving Diet Compliance
Tendency to foster dependence in "special child"
Coordination of care givers
Difficulty setting limits
Child views eating as battleground
Child receives inconsistent messages
As a parent or care giver, try to view limits as necessary and not as punishment.
Offer allowed foods only.
Redirect: plan distractions ahead of time, redirect your child's attention to favorite non-eating activities such as games or books (for example, "This might be a good time for us to read," or "How about going out to ride your bike?" Be assured that without pressure your child can make the right decisions.
Learn appropriate expectations for the child's age from your clinic.
Allow your child to participate in measuring the quantity of allowed food by no later than age three years (for example, "Let's choose your snack and count together how many pieces you will take.")
Be aware of the wisdom of "pulling back" when faced with increasing conflict.
Remember that young children use feeding as an arena for exercising control. Don't present eating as a request (for example, "Do mommy a favor and eat this"). Instead, firmly say, "It is now time for your drink."
To de-escalate conflict for children under age three, briefly leave the room or hold the child calmly for several minutes without talking about eating. For a child over age three consider use of time out; offer choices for the medical food in flavor, consistency and temperature.
Recognize the importance of parents working together as a team. If you are the parent who is detached or on the periphery of diet management, try to become more actively involved.
Child psychologists have found that when parents are in situations where they have little control, they are likely to deal with their children in a way that is characterized by high levels of emotion and criticism, and low levels of praise. But studies show children eat less, not more, when care takers become too active. Children quickly learn to manipulate their care givers' desperation to get them to eat. (Statements like "Do mommy a favor and drink this" are counterproductive.) Once the child realizes his parents are no longer emotionally invested in all his or her actions, cooperation will improve.
One very important thing that parents can do to reduce power struggles is to give the child the feeling that he or she has some control over a situation that is restrictive by nature. Whenever possible, parents should offer the child an element of choice. For example "You can either take your drink from the red mug or the blue cup." Also, children can be allowed some control over preparation of their food and the medical food. For example, for the medical food, the child can be given a choice of flavorings (chocolate, strawberry, etc.), of consistency (how much water is added) and of temperature ( room temperature, cold or even frozen).
It is not uncommon in families of children with chronic conditions for one parent to become over-involved with the child while the other takes a very minor role. Most often, mothers are intensely involved in the day-to-day care of their child while fathers flee into the world of work. More equal distribution of responsibility of care givers may be a crucial factor in improving compliance. Sometimes, a mother's over-involvement adds to the emotional intensity of the situation. Her expressed emotion becomes greater and power struggles increase. If one parent has the burden of exclusive responsibility for the diet, the level of stress is great for that parent. A study of families of children with PKU has shown that parental cooperation and family cohesiveness are important for dietary adherence. Often the parent who is less emotionally caught up in the child's diet may be the preferred parent to supervise the child's diet precisely because of the greater detachment.
Consider a reward system
Formal reward systems at times have their place in PKU management. Use of stickers and other reward systems can jump-start a stalled situation marked by a power struggle. However, care givers need to be careful that the child does not view such rewards as a subtle form of pressure. In many studies the children who were rewarded for trying new foods showed less enthusiasm for the food than children who were not rewarded. If after a short trial you find the use of rewards causes increased resistance or conflict, simply stop the rewards. If you or the clinic decides that a reward system is worth trying, it is important to make sure that the reward is age-appropriate, the chosen item or privilege is one that the child can get excited about, and it is realistic for the parent to give the reward quickly. Some examples of non-food rewards which have proved effective for preschool-age children include extra bedtime stories, stickers, puzzles and small toys. If a longer term reward is appropriate, a trip to the park or zoo could be used. Children ages six to twelve can be offered baseball cards, later bedtimes on a weekend, extra time alone with a parent, or a chance to attend a concert or sporting event. Consult with your PKU clinic if you have difficulty carrying out a reward system. The clinic should make recommendations based on family dynamics, or work with you and a mental health professional to carry out a plan to deal with the problem.