28(6) Weaning from tube feedings: many different pathways. Part I

Developing the ability to eat by mouth and grow at an appropriate rate is usually viewed as a simple part of infancy and childhood. When a baby is born, the parents expect this process will unfold smoothly for both parent and child with no more than typical bumps in the road as the child matures. Medical or developmental issues, however, can disrupt this process and result in the need for feeding by tube to support the child’s ability to be nourished and grow.

A pediatric Feeding Special Interest Group, now known as the Pediatric Feeding Association, was formed 11 years ago in the Seattle area. A topic in the forefront of discussions throughout this organization’s history has been treatment for the infant or child reliant on tube feeding. Approximately a decade ago, this group began to explore the use of intensive or rapid treatment programs to wean children from feeding tubes in addition to the more standard, slower treatment models. This article provides a general description of these treatment models. The aim of this edition of NUTRITION FOCUS is to improve care and feeding outcomes for children and families dealing with feeding issues that lead to the use of a feeding tube.

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Weaning from tube feedings: many different pathways. Part I

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28(5) Nutrition Issues in Children with Myelomeningocele (Spina Bifida)

Myelomeningocele, or spina bifida, is the most common neural tube defect (NTD). NTDs are caused by abnormal fetal development of the neural tube when the opening in the spinal cord fails to close by the 28th day after fertilization of the egg, often before a woman knows she is pregnant. During this stage the neural groove folds over to become the neural tube, which becomes the spinal cord and vertebral arches. If a portion of the groove does not close, it results in a sac on the spine that contains meninges and spinal nerves. The location of the NTD on the spine affects the motor function and level of sensation in the lower parts of the body. A higher lesion corresponds to greater paralysis.

Children with spina bifida have complex and lifelong medical care needs. A team of providers, including the registered dietitian (RD), provides optimum care by using a comprehensive, coordinated, multidisciplinary approach. The child and his/her family form the core of the interdisciplinary team. The primary care provider (PCP) functions as the “medical home” and supports the family in advocating for the child from the time of entry into the practice, through adolescence and the transition to adult providers. The PCP’s central and unique role includes coordinating the required ongoing communication and management with pediatric medical and developmental sub-specialists including RD, orthopedist, urologist, neurosurgeon, nurse specialist, speech therapist, physical therapist (PT), occupational therapist (OT), social worker, and other community providers.

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Nutrition Issues in Children with Myelomeningocele (Spina Bifida)

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28(4) Phenylketonuria (PKU) and Hyperphenylalaninemia (HPA) – A Review

Phenylketonuria (PKU) and hyperphenylalaninemia (HPA) are metabolic disorders that affect an enzyme required for the conversion of phenylalanine to tyrosine, leading to a build-up of the amino acid phenylalanine (Phe) in the blood. Increased blood levels of Phe are associated with negative neurologic outcomes, including intellectual disability. These negative outcomes are preventable with treatment that includes the restriction of Phe in the diet. PKU and HPA are optimally treated by an interdisciplinary team that addresses the nutritional, medical and social aspects of the condition.

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Phenylketonuria (PKU) and Hyperphenylalaninemia (HPA) – A Review

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28(3) Nutrition Management of Cystic Fibrosis

This issue of Nutrition Focus discusses the genetic disease, cystic fibrosis. An overview of the disease will be presented along with nutrition implications, assessment, and intervention. The current evidence-based guidelines for nutrition-related management of infants and adults with cystic fibrosis have been established by the Cystic Fibrosis Foundation. The recommendations by the committee members are incorporated into the article.

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Nutrition Management of Cystic Fibrosis

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28(2) Feeding the Child with Very Low Energy Needs

Neurologic impairments, whether associated with a congenital disorder or due to a traumatic event, can influence the nutritional requirements of children with special health care needs. In some cases the nutrition issues are present due to medical complications and severe disabilities, including seizures, gastrointestinal disturbances such as gastroesophageal reflux (GER), vomiting, or constipation; oral-motor dysfunction, severe intellectual disabilities, hypotonia, minimal physical movement, poor head control, and developmental delays.

Some children, such as those with athetoid cerebral palsy, or those with pulmonary and cardiac conditions, require a very high intake of energy (kilocalories) due to increased muscle tone and respiratory rates and a high level of involuntary movements. Many resources are available to aid in the nutrition management for children with high energy needs. For other children, metabolic rate and activity level are very low compared to children of a comparable age and size. Thus, their energy needs are reduced, but there is little documented information available

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Feeding the Child with Very Low Energy Needs

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28(1) Behavior Management of Feeding Problems

Normal development of feeding skills in children may be altered due to several factors including parenting skills, child’s temperament, family eating patterns, developmental skills, and chronic illness. In addition, feeding problems often include behavior concerns. Interventions directed at improving nutritional intake, without guidance on managing behavior that impacts eating patterns often leads to failure in changing a child’s nutritional status, and increases the risk for nutrition and growth problems. Children with chronic health conditions are at high risk for nutrition and related feeding behavioral problems due to changes in developmental skills, behavior and emotional regulation, and changes in digestion and metabolism related to many chronic conditions. Strategies to address these challenges can augment treatment plans and improve outcomes, including improved growth, behavior, parent-child interaction, and cognitive development.

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Behavior Management of Feeding Problems

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27(6) Emergency Preparedness – Helping Families and Their Children with Special Nutrition Needs

A number of recent natural disasters have brought the importance of emergency preparedness to the public’s attention. As a result, many organizations have issued preparedness recommendations to assist individuals and families in becoming better prepared for an emergency. Despite a number of available preparedness recommendations, few exist to assist families caring for children with special nutrition needs. In addition, regardless of special health care needs and concerns related to emergencies, families remain unprepared for a disaster event.

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Emergency Preparedness – Helping Families and Their Children with Special Nutrition Needs

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27(5) The Picky Eater

Children with special health care needs seen for a nutrition evaluation are often described as picky eaters. This is both a vague and variable description, but one commonly used and a challenge to treat. The purpose of this article is to:

• Discuss what a picky eater is, and why a child is described as a picky eater
• Outline components of possible treatment strategies
• Offer practical tips on how to implement change

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The Picky Eater

Also with this issue:
Handout: De-Stressing” Strategies for Parents of a “Picky” Eater

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27(4) Update – Attention Deficit/Hyperactivity Disorder and Nutrition Issues

Attention Deficit/Hyperactivity Disorder (ADHD) is one of the more common neurobehavioral chronic disorders of childhood. ADHD is defined by academic or behavioral
problems and symptoms of inattention, hyperactivity, or impulsivity. These symptoms must be inappropriate for the child’s developmental level, be present (at least in retrospect) before age seven, and be present in more than one setting (usually home and school). It is not enough to just have symptoms – they must be severe enough to interfere with function in the school or social situation.

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Update – Attention Deficit/Hyperactivity Disorder and Nutrition Issues

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27(3) Food Insecurity and Children with Special Health Care Needs

Registered Dietitians, DTRs, and other health care professionals are in a unique position to recognize the issues associated with food insecurity in their patients, and also play a leadership role in the development of programs that can help end food insecurity. RDs and DTRs understand the effects of inadequate dietary intake and food insecurity on health and well being. They recognize that if a child or adult is overweight, this has nothing to do with their degree of food security. They recognize that the root of classroom behavioral issues may be related to food security at home and they also recognize that children with special needs are more likely to live in food insecure homes.

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Food Insecurity and Children with Special Health Care Needs

Review of Resource: Academy of Nutrition and Dietetics Pocket Guide to Children with Special Health Care and Nutritional Needs

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