Eating management as a part of medical nutrition therapy for children with cystic fibrosis

An Ellyn Satter Institute Position Statement

Eating management as a part of medical nutrition therapy for children with cystic fibrosis

Inés Anchondo, Dr PH, RD, LD, CSP, MPH; Edie Applegate, MS, RD, LDN, CDE; Margot Cleveland, mother of a child with cystic fibrosis

Nutrition therapy: integral to cystic fibrosis management

The goals of nutrition therapy for the child and adolescent with CF

  1. Improve or maintain the quality of life, nutritional status, and physiological and emotional health.
  2. Provide adequate nutrients, including calories and supplementary fat soluble vitamins, to support optimum growth and a strong immune system, thereby preventing as much as possible the acute and long-term complications of CF and associated co-morbid conditions.
  3. Support parents in feeding well, including making wise use of oral supplements and tube feedings.
  4. Support children and adolescents in growing up to be competent eaters.
  5. Support children in taking stage-appropriate responsibility for managing their own condition.

Medical care requires supporting the child’s self-mastery

Medically, to take care of their child and adolescent with CF, parents and caregivers must take firm leadership with treatment, and the child must achieve self-mastery with compliance. To help the child achieve such self mastery, see Medication and the division of responsibility in feeding. Such self-mastery comes into play when the child and adolescent:

  • Voluntarily takes parent-administered and eventually self-administered oral pancreatic enzymes.
  • Voluntarily participates and eventually performs pulmonary therapy and exercise.
  • Ingests prescribed and needed vitamins, courses of laxatives, antibiotics, and other medicines and supplements.
  • Cooperates with necessary medical examinations and procedures, including throat cultures, blood draws, x-rays, IV placement, and others.

Nutritional care requires supporting the child’s self regulation and autonomy

With eating, the issue for the child is self regulation, not compliance. To support their child in achieving optimum nutrition, parents must follow Satter’s Division of Responsibility in Feeding (sDOR). Parents provide leadership with feeding and give the child autonomy with eating. Rather than being expected to follow dietary prescriptions, children who are given autonomy with eating are trusted to eat as much or as little as they want at the regular meals and snacks that parents provide. In combination with treatments for CF, applying sDOR begins at birth and continues throughout the growing-up years. For children with CF, the same as for other children, sDOR can and must be applied in a developmentally appropriate fashion.

  • For infants, choose breastmilk or formula, then calm and organize the infant by feeding smoothly, following infant cues for when, how often,how fast, and how much.
  • During the transition to family food at family meals, parents remain responsible for the what of feeding at the same time as they increasingly become responsible for the when and where. Parents build on the child’s increased oral-motor capabilities and regularity with eating to introduce solid foods and make the transition to including the child in family meals and structured snacks.
  • From the toddler stage onward, parents manage the what, when, and where of family meals and sit-down snacks. Then parents let children determine how much and whether they will eat of what parents provide at those structured meals and snacks.

Parents also observe a division of responsibility in activity by providing structure, safety, and opportunities to move, and letting children determine how much and whether to move and the manner of moving.

 Children with CF need to achieve eating competence

Positive parenting with food allows children with CF to achieve and maintain eating competence. That is, they:

  • Feel positive about eating and about food;
  • Are relaxed around unfamiliar food, eat some foods, ignore others.  
  • Are relaxed about getting enough to eat, has a sense of hunger and fullness.
  • Enjoy family meals and behave well at mealtime.
  • Grow and gain weight consistently, in a way that is right for them.  

Throughout the growing-up years, all children, including those with CF, maintain their ability to internally regulate food intake and gain weight consistently. Depending on their temperament, mastery opportunities, and challenges of the CF regimen, children gradually learn to like a greater variety of foods and take increasing responsibility for self care of CF. During the high school years, in preparation for living independently, children with CF develop food-management and CF-management skills. At the same time, the adolescent living at home benefits greatly from consistently participating in family meals.

Structured meals and snacks are essential

Parents’ regularly offering structured meals and snacks that include all the food groups and an excellent fat source supports the child’s eating competence and therefore nutritional status and weight gain. To help parents sustain the considerable task of maintaining meals and snacks, they must be encouraged to use food that they find rewarding to plan, prepare, and eat. To help parents avoid pressure tactics such as forcing the child to eat and catering to the child’s food preferences, parents must be helped to understand (with both in-clinic education and encouragement to study Ellyn Satter’s books and other sDOR-consistent publications) that children’s normal eating patterns are erratic and inconsistent. What children like and eat enthusiastically one time, they ignore the next; they eat a lot one day, a little the next; they are likely to eat little for many meals, then, periodically eat an astonishing amount of food.

 To support children’s erratic eating patterns as well as to allow them to get enough calories to compensate for CF-related malabsorption and gain weight consistently, parents can be considerate without catering with meal-planning. Menus can match unfamiliar with familiar foods and include ample high-fat foods (butter, salad dressing, gravy, avocado) to allow children to increase their calorie intake when needed.

Children with CF can regulate food intake

Properly attended to and supported, the internal regulation cues of hunger, appetite and satiety of children with CF are trustworthy. Those cues are in dynamic equilibrium with tendencies for movement and the broader environment. This equilibrium combines to produce, where possible given the reality of disease progression, a consistent growth trajectory that reflects each child’s genetically determined weight gain and growth potential. A weight trajectory below the 50th percentile is appropriate as long as it is consistent and the child has adequate fat stores to withstand illness. On the other hand, abrupt weight flattening or faltering is unlikely to be appropriate, needs to be promptly investigated, and may have as much to do with disease-management issues as food consumption.

Attempting to apply prescriptions for calorie intake and growth undermines children’s eating competence, distorts their sensitivity to internal regulatory cues, and competes with metabolic homeostasis. Energy regulation is based on the amount of calories and other nutrients that actually get into the blood stream and the cells, not the amount of calories that go through the gastrointestinal tract. Thus, an eating competent child who loses calories through the GI tract intuitively eats more to compensate. Since metabolic regulation is long term, with cycles that last weeks, months, seasons, even years, children with CF who eat little during illness do catchup eating when they feel better. Moreover, the nutritional goal with CF or any other condition is to support optimal nutrition, not promote over-nutrition. Once nutritional needs are satisfied, additional calories and other nutrients do not further enhance health, medical status, or the immune system.

When parents follow sDOR and feed in a developmentally appropriate fashion, children with CF are eating competent: they enjoy eating and voluntarily eat as much as they need to gain weight and grow consistently. Within that positive context, children’s showing a loss of interest in eating over several days, filling up quickly, having regular stomach aches, and showing a change in stool patterns can signal GI issues and possibly even warn of intestinal obstruction. When children are not competent with eating, that is, when they don’t enjoy eating and require coercion to eat, the eating dysfunction can mask medical issues. These issues include constipation, DIOS, bacterial overgrowth, or a need to adjust enzyme dosing.

 The table below compares the Satter Feeding Dynamics Model (fdSatter) with the conventional approach in managing childhood CF.

Child of Mine

Child of Mine

A warm, supportive, and entertaining book for parents about basic nutrition for infants and young children, and a solid nutrition reference for professionals.

Use high calorie supplements wisely

High-calorie supplements, delivered orally or via gastric tubes, are frequently given to children who have CF. While supplements may be useful in correcting long-term energy and growth deficits, there is no evidence that their usage increases the food intake and corrects the faltering growth trajectory of children who have CF. In fact, given the powerful and flexible nature of the regulatory process, it is likely that children with CF simply compensate by eating less when given these supplements. The same as other children, children with CF make up for periodic poor food intake associated with intestinal and/or lung problems by eating more after they feel better.

However, parents of children with CF are keenly aware of the life-threatening nature of CF and feel particular urgency to support their child’s nutritional status. As a consequence, parents are likely to benefit from being able to offer high-calorie supplements either orally or as tube feedings, particularly during periods of disease exacerbation and poor food intake. To offer these high calorie supplements in a way that they do not undermine the child’s eating competence, consider these approaches:

  1. Offer them as scheduled sit-down snacks between meals and at bedtime. Let the child consume as much or little as desired.
  2. Offer them regularly and routinely during illness and let the child consume as much or as little as desired.
  3. In contrast to #1 and #2, consider and treat the high-calorie supplement as medicine and require the child to consume a certain amount, during illness and/or before active play.
  4. Routinely give tube feedings at night as a bolus feeding or by continuous drip ending four hours or more before breakfast.
  5. Increase tube feedings to daytime use during illness, paying particular attention to the child’s satiety cues and avoiding feeding to the point where the child is uncomfortable and revolted by having a too-full stomach.

Webinar


Raising special needs children to be competent eaters

All children have eating capabilities, even special needs children. By looking for, trusting, and supporting these capabilities, care providers can resolve feeding problems, prevent future feeding issues, and transform mealtimes from anxious to joyful. 

This three-part webinar, presented by Ines Anchondo, Pam Estes, and Ellyn Satter offers instruction, case studies, and research behind applying the Satter Feeding Dynamics model to feeding children with special needs.  

 

Management of cystic fibrosis in childhood

Issue

Conventional approach

Satter Feeding Dynamics Model

Nutritional goal

Over-nutrition

Optimum nutrition

Calorie level

Prescription of 110% to 200% of calories calculated from standard requirements for age, size, and activity to compensate for malabsorption and lung dysfunction.

Energy intake governed by child’s own hunger, appetite and satiety. Since energy regulation is metabolically determined, child’s hunger, appetite, and satiety compensate for malabsorption, lung dysfunction, and periodic illness.

Weight, height, growth

 

Recommendations of particular  weight and stature for age generally interpreted as maintaining BMI at the 50thpercentile or above.

Proceeds on a consistent weight-for a-age z-score trajectory determined by the child’s own growth potential.

Providing for higher caloric needs

May or may not reflect child’s energy needs. Prescribes and enforces eating times, servings, and percentages of protein, fat and carbohydrate from all food groups for each meal and snack. Using detailed nutritional monitoring, selective attention and behavioral reinforcement. consumption.

Parents follow sDOR by providing reliable family meals and snacks at scheduled times, adapted to family food preferences and lifestyle. Menus include all the food groups and an excellent fat source. Child chooses from family menu, eats as much or little as desired determined by hunger, appetite, and satiety.

Activity

Advice varies from no advice to limiting activity to conserve calories to prescribing amounts and types of activity.

Provide opportunities for the child to be active including family activities. Let child choose activity and level. Limit passive sedentary activities.

Child’s Eating Competence

Low. Child is compelled to follow a prescribed food intake plan. Hunger, appetite and satiety overridden or denied. Food variety depends on adherence to prescribed pattern. Attitudes and behavior relative to food, eating, and mealtime are likely to be impaired.

High. Child retains positive attitudes about eating and capability for internal regulation of food intake. Child develops positive, stage-related food acceptance capabilities, enjoys positive family mealtimes, and behaves nicely at meals. Parents avoid pressuring the child to eat in any way, including catering to the child’s food preferences.

Weight monitoring

Assesses the child’s weight increases according to the target BMI or weight gain. Adjusts calorie prescription to achieve target weight and exhorts parents to adhere to the prescription. 

Supports consistent growth and weight gain at child’s own growth trajectory. Addresses weight fluctuation by considering feeding dynamics as well as medical and psychosocial issues.

G-tube or oral supplement

Views as a solution to low weight, less-than-prescribed weight gain, disease exacerbation or progression.

Consider and/or manage in the context of excellent feeding based on sDOR. Use for addressing growth faltering only on an individual basis after assessing medical and feeding issues, illness, feeding dynamics, and food selection. 

Parenting style

Authoritarian. Medical team enforces energy/growth prescriptions with praise or reproach, addresses problems by coercing parents to feed more. Parents, in turn, reward or punish child for eating/not eating. Relationships are characterized by frustration, stress, guilt, and anxiety.

Collaborative. Medical professionals partner with parents, respect their concerns, support sDOR and do medical, feeding dynamics, and nutritional education, assessment, and problem-solving even when medical signs are positive. Relationships are characterized by compassion, trust and respect.

Division of responsibility in feeding

None. Parents determine

what, how much child eats, give little if any autonomy.

sDOR. Parents provide leadership with food management, give child autonomy in determining what and how much to eat of what parents provide.

© 2016 The Ellyn Satter Institute

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