29(5) – A Focus on Family-Centered Care from the Parent’s Perspective

The term “family-centered care” (FCC) was coined in the 1980’s to describe a philosophy of care for children with special health care needs and their families. It was a radical paradigm shift from the previous philosophies of “system-centered care” in which the needs of, or benefit to, the system drive the delivery of services and “child-centered care” in which the strengths and needs of the child, apart from the family, drive the delivery of services. The definition of FCC has since evolved from a philosophy of care to a philosophy of care and a standard of practice.

This issue provides the perspectives of three parents of children with special health care needs and includes a discussion of family-centered care.

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A Focus on Family-Centered Care from the Parent’s Perspective

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29(4) Weaning from tube feedings: many different pathways Part 2B – Case Study Illustrations

This article is Part 2B in the series of 3 articles about the topic of weaning from a feeding tube. Part 1 was published in November/December 2013. Part 2A was published as the May/June 2014 issue. That issue provides two case studies. Both of the previous issues can be accessed by those who have a current subscription to the Nutrition Focus newsletter

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Weaning from tube feedings: many different pathways Part 2B

Appendix 1 – Program Questionnaire

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29(3) Weaning from tube feedings: many different pathways Part 2A – Case Study Illustrations

This article is Part 2 of the series. Part 1 was published in November/December 2013. It can be accessed by those who have a current subscription to the Nutrition Focus newsletter.

Part 1 describes several models of treatment for weaning from a feeding tube. They included gradual controlled weaning programs and intensive feeding programs, both hospital based and community based. The goal in this issue is presentation of two (A and B) of the four case studies that illustrate the models below. The July/August 2014 issue will present the other two cases (C and D).

A) Gradual wean involving an infant, a fraternal twin born at 28 weeks gestation. The focus is weaning from a nasogastric (NG) feeding tube in a home-based program supported through weekly hospital therapy sessions.

B) Home-based program for a three year old girl weaning from a G-tube. The unique focus is therapeutic support from a distance due to family’s location and lack of insurance with the mother coordinating the way due to her organizational skills and knowledge of her daughter’s medical issues.

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Weaning from tube feedings: many different pathways Part 2A

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29(2) Nutrition Issues in Children with Asthma

Asthma is a chronic inflammatory disorder of the airways that can cause wheezing, shortness of breath, chest tightness, and coughing. The inflammatory responses associated with asthma can cause airway narrowing and excessive secretions. Over time, these responses result in injury of epithelial cells in the respiratory system, airway remodeling, and pulmonary dysfunctions. Genetic as well as environmental factors play an important role in the development of asthma.

Asthma, one of the most common chronic diseases in the pediatric population, affects approximately 7.1 million children (9.3% prevalence) from birth to 18 years of age. The prevalence of asthma in both adults and children has been increasing since the 1980s, becoming a major public health concern. Asthma is a chronic condition with periodic exacerbations, causing children to miss an estimated 14 million school days per year. Undiagnosed and poorly controlled asthma can lead to serious outcomes, even death. In 2009, asthma attacks led to 774,000 emergency room visits by children under 15 years of age.3 In the same year, about
160 children in this age group died from asthma. The total direct cost (health care related) and indirect cost (such as loss of productivity) of asthma is estimated to be as high as 56 billion dollars annually.

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Nutrition Issues in Children with Asthma

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29(1) Selected Pediatric Nutrition Questions and Answers

This issue is a compilation of various questions we have received from our Pediatric Nutrition Listserve. This listserve is designed for members to submit questions and receive an evidenced based answer. Subscribers to Nutrition Focus who are Registered Dietitians can also become members of the listserve (see page 9 for information).

These questions were submitted to the Pediatric Nutrition Consultation Online listserve between November 2011 and January 2014. We felt the responses were still accurate, but please note there may be more current references for some of the questions.

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Selected Pediatric Nutrition Questions and Answers

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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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