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 disorders, 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.

Feeding disorders in typically developing children are reported to be in the range of 25%–35% with a much higher prevalence (40%–70%) in babies and children with special health care needs or developmental disorders.1,2 Some of these children will require supplemental tube feeding at some point in their care. Multiple factors can lead to the development of feeding problems such as prematurity, gastrointestinal disorders, pulmonary and/or cardiac disease, developmental disorders, or congenital defects. For many children, tube feeding is used for a short period while recovering from the condition that necessitated the tube support. Other times however, tube feedings are needed over a longer period of time. This results in secondary effects for the child and family with the major problem being the need to ultimately wean from tube feeding to acquire age and/or developmentally appropriate oral feeding and self-feeding skills.

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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.1 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 for assessing children with low energy requirements.

For any child with special health needs a coordinated team approach provides for communication and the most effective care. This team includes parents or caregivers and other professionals who work with the individual child. The team should include a registered dietitian (RD), who has experience working with families who have children with special needs. The RD assesses the unique requirements of a child with very low energy requirements.

This NUTRITION FOCUS edition will review issues related to energy and nutrient needs for children requiring a very low level of kilocalories. Two case studies will be presented to illustrate the discussion.

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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

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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

The paragraph above is powerful, illustrating how health care providers may overlook issues of food insecurity in our society. One might wonder how much the tests and procedures cost the health care system. On the individual level, this family spent time, worry, and probably money getting their son tested and did not get the help they needed. The purpose of this article is to raise awareness about this topic with providers who work with children and families (especially if the child has a chronic health need that may overshadow the issue of food insecurity), to review the effects of food security on children’s health, and to describe ways that health care professionals can identify and assist food insecure families. (See Glossary on page 12.) The authors introduce a “Hunger Screening Algorithm” (Figure 2 on page 3 and 4) used in the State of Vermont as a model for professionals to help them identify and assist families at risk for hunger.

In 2010, based on the most recent reported data, 14.5% of households reported food insecurity as shown in Figure 1. Additionally, over 20% of US households with children did not have a consistent supply of nutritionally adequate food due to economic constraint and therefore were considered food insecure.1 The rate of food insecurity is almost double (39%) for low income families with children. Poverty guidelines are prepared yearly by the Assistant Secretary for Planning and Evaluation (ASPE) from the US Department of Health and Human Services (HHS) (See aspe.hhs.gov/poverty/12poverty.shtml.) ASPE does not provide percent of poverty information; for example, a low income for a family of four is defined as a family income of less than 185% of poverty or a total family income of less than $42,643/year. Various other federal, state and local organizations and agencies may publish percent of poverty tables for their own programs often using the poverty guidelines from ASPE to calculate 150% or 185%, etc. An example of a table of this type is available online. (See www.dhs.ri.gov/Portals/0/Uploads/Documents/Public/General%20 DHS/FPL.pdf).

Food insecurity is a measure of the household budget available for food and therefore represents a balance between cost of living and available resources. Households with higher expenses such as medical, transportation or housing costs have higher rates of food insecurity for the same income. Families raising a child with a disability are particularly at risk for food insecurity because of higher financial burdens and greater risk for being underemployed.

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Food Insecurity and Children with Special Health Care Needs

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