With the majority of individuals with Cerebral Palsy reporting feeding or digestive difficulties, a dietary counseling program can be highly beneficial. Skilled practitioners work with primary care physicians to adjust diet, intake, substance, and supplements in ways that contribute significantly to an individual’s overall health. Learn what to feed, how to prepare food, how to feed and when to feed.
What is nutrition and diet counseling?
The majority of individuals with Cerebral Palsy, 93%, will experience feeding difficulties. Since Cerebral Palsy results in impairment of muscle groups, facial muscles can be affected. The facial muscles are one of the strongest muscle groups in the body. Impairment hampers a child’s ability to chew, suck, or swallow, thereby creating a high risk for undernourishment, failure to thrive, malnutrition, growth delay, and digestive difficulties. The following conditions are common in those with Cerebral Palsy:
- 86% experience oral-motor dysfunction
- 77% are diagnosed with gastroesophageal reflux
- 74% report chronic constipation
- 60% present with swallowing disorders
- 32% report abdominal pain
Other conditions include vomiting, chronic pulmonary aspiration, diarrhea, choking, drooling, flatulence, and pneumonia. The individual may take longer and experience discomfort when eating. He or she may also become sluggish from undernourishment, and dental problems may arise from excess drooling, longer meal times, or from stomach acids when aspiration occurs.
Who benefits from nutrition and diet plan counseling?
According to the American Dietetic Association, or ADA, nutritional services are essential components of a comprehensive care plan. The demand for nutrition services is high in those with developmental disabilities and those with special health care needs.
- Developmentally disabled- In 2008, the Administration on Developmental Disabilities estimated 4.5 million individuals with developmental disabilities were living in the U.S.
- Special health care needs- In 2005-2006, the National Survey of Children with Special Health Care Needs estimated approximately 10.2 million children, from birth to 17, have special health care needs. These children are at an increased risk for chronic physical, developmental, behavioral, or emotional conditions and require health care services of a type or amount beyond that required by children in general.
- Invisible disabilities- The National Organization on Disability, or NOD, also maintains that not all individuals with disabilities are visible in the studies; some disabilities are “invisible or hidden” conditions, such as hearing, cognitive, psychiatric, or chronic issues, that may not be physically apparent.
Those with Cerebral Palsy who may benefit from nutrition and dietary therapy include individuals with:
- Abdominal pain
- Bladder control
- Bowel (intestinal) obstruction
- Bowel incontinence
- Chewing difficulties
- Chronic pulmonary aspiration
- Delayed gastric emptying
- Delayed growth and development
- Dental caries/tooth decay
- Enuresis (bed wetting)
- Esophageal bleeding
- Failure to thrive
- Feeding difficulties
- Gastroesophageal disease
- Gastroesophageal reflux (GERD)
- Gastrointestinal motility
- Gastrointestinal tract bleeding
- Genitourinary problems
- Growth impairment (maturation)
- Inadequate oral intake
- Intestinal dysmotility
- Irritable bowel syndrome
- Obesity and weight management
- Oral motor dysfunction
- Primary intestinal pseudo obstruction
- Prolonged colonic transit
- Pseudobulbar palsy
- Sucking difficulties
- Swallowing difficulties
- Urinary incontinence
- Urinary tract infections
- Vitamin deficiency
How do those with Cerebral Palsy benefit from nutrition and dietary therapy?
With the majority of individuals with Cerebral Palsy reporting feeding or digestive difficulties, a dietary counseling program can be highly beneficial. Skilled practitioners work with primary care physicians to adjust diet, intake, substance, and supplements in ways that greatly contribute to an individual’s overall total health. Most dietary concerns for those with Cerebral Palsy focus on how to prepare food, what to feed, how to feed, and when to feed.
Depending on the severity level of the individual’s Cerebral Palsy, his or her digestive challenges and the ability to properly chew, swallow, and self-feed, effective dietary therapy can be devised to meet the individual’s unique needs. Some of the more common dietary concerns for those with Cerebral Palsy include:
- Ways to prepare food- dietary practitioners can adjust textures and consistency of food by pureeing, chopping and grinding foods for a more palatable experience. Foods can be softened by adding broth, gravy, milk, or juices to accommodate constipation issues. Liquids can be thickened for ease in swallowing.
- Ways to feed- optimally, practitioners look for ways a person can self-feed, a skill that greatly enhances quality of life. This may include training an individual to use adaptive equipment. However, when caregivers are needed to assist in feeding, practitioners can teach effective ways of doing so. This can involve appropriate space between servings to allow for natural swallowing, or feeding smaller portions more often throughout the day. In some cases, individuals with Cerebral Palsy must rely on a feeding tube for partial or total nutrition intake.
- When to feed- adjusting timing of meal times may involve smaller, more frequent meals throughout the day. Sufficient time is required between bites or drinks to allow for natural swallowing. Sometimes meals are scheduled around medication needs to avoid stomach upset, curve appetites, and address drowsiness.
- What to feed- if an individual with Cerebral Palsy has trouble with asphyxiation, reflux, or pneumonia, it is important to avoid foods that are more likely to exasperate these conditions, like nuts, seeds, and hard or stringy foods. Diets can be adjusted to provide more energy, balance metabolism, compensate for deficiencies, and enhance digestion. Vitamin, mineral and food supplements may assist those with malabsorption or who tire when eating. High fiber diets curb constipation. Prune and apricot juices may provide natural laxative qualities. Some foods enhance absorption of vitamins and calcium.
- Providing proper mouth care- drooling, aspiration, and long-term anti-seizure medication use can contribute to an increased risk of dental decay, cavities, gum disease, and bacterial infections. Dietary practitioners can substitute sugars and carbonation with fresh fruits and vegetables. They also consult dental specialists to encourage proper dental hygiene, which may include regularly brushing, drinking fluorinated water, and scheduling dental check-ups.
Most children with Cerebral Palsy will live well into adulthood. Industry experts have identified leading factors that can contribute to diminished life expectancy for those with Cerebral Palsy. Feeding has been cited as a contributing factor that can affect life expectancy. Others include mobility, cognitive functioning, vision, and self-care. Becoming aware of and managing these factors, including feeding issues, can positively affect the life span of an individual with Cerebral Palsy.
What does nutrition and dietary therapy entail?
Nutritionists and dietitians assess, plan, and implement dietary plans to meet the unique needs of the individual, taking his or her health conditions, cultural requirements, and environmental needs into account. Nutrition therapy is typically applied in two phases – assessment and treatment, and plans usually answer two basic questions:
- What change is desired?
- How can this change be accomplished?
The primary steps involved in establishing nutritional and dietary parameters are:
Consult and assess
The nutritionist or dietitian maintains professional and interdisciplinary relationships with care plan team members in an effort to understand, monitor and evaluate health care needs. The primary focus is on input that impacts the dietary and exercise requirements of the nutrition and dietary plan. The nutritionist or dietitian will analyze data from medical history, clinical discoveries, and lab results for a detailed assessment of the person’s needs, habits, behaviors, support system, and environmental influences. The American Dietetic Association has published a Nutrition Assessment Matrix as part of the International Dietetics and Nutrition Terminology Reference Manual, which details relevant items for assessment. Elements helpful in evaluating nutrition and dietary needs are:
- Food and nutrient intake – inventory of intake, absorption and consumption of fluids, fats, minerals, vitamins, calories, fiber, proteins, amino acids and alcohol.
- Food administration – understanding of the feeding process, diet choices, reliance on tube or venous feeding, assistance required of others, and food preparation choices, such as convenience, prepared, and homemade.
- Medications and herbal supplement usage – accounting of medications and supplement levels and usage, and the effect on weight loss, metabolism, absorption, appetite, fluid retention, energy expenditure, and interactions with other medications.
- Knowledge, beliefs and attitudes – knowledge level, emotional factors (anxiety, frustration, and preoccupation), confidence level, willingness to commit, consistency in commitment, acceptance of plan, ability to change behavior, and propensity to overcome obstacles and setbacks.
- Behavior – understanding compliance dynamics, support network, consumption behaviors, and control, or lack of control factors.
- Physical activity and function – detailed description of exercise levels and intensity, activity levels (sedentary or excessive), quality of life dynamics, cardio respiratory function, fatigue, and strength/endurance factors required to feed.
- Anthropometric data (science of size, weight and proportions) – documentation of height, weight, weight change history, and body mass.
- Medical history – accounting of diagnosis of conditions within the following systems: cardiovascular, endocrine/metabolism, excretory, gastrointestinal, gynecological, hematology/oncology, immune, integumentary (skin), musculoskeletal, neurological, psychological, respiratory, orthopedic and other factors (abuse, illness, trauma, pain, and transplants).
- Diagnostic history – data from the following: acid-base profile, electrolyte profile, fatty acid profile, gastrointestinal profile, glucose/endocrine profile, inflammatory details, lipid profile, metabolic rate, mineral levels, nutritional anemia, protein profile, urine profile, and vitamin levels. Also includes overall appearance, body language and test results for: cardiovascular-pulmonary system, muscles and bones, digestive functioning, nerves and cognition, skin health, and vital signs (blood pressure, heart rate, respiratory rate and temperature). Vision, hair health, and nasal/facial muscle control diagnostics are also relevant.
- Treatment history – review of surgeries, treatments (chemo, radiation and end-of-life care) and therapy.
- Social history – the socioeconomic status, living environment, ability to self-care, domestic concerns (physical, mental, emotional, or sexual abuse), support network, geographic concerns, occupational factors, lifestyle routines (exercise, work, home, smoking, drinking, etc.), crisis, stress, trauma, and environmental factors.
Plan and advise
Gaining insight from the findings for the consults and assessments, the nutritionist/dietitian will then consider the challenges, solutions, costs and timing elements for an effective and efficient dietary plan. The plan must contain access to supportive food venues with healthy food choices at reasonable portion sizes. The plan must be convenient, available and affordable. Plan options are then presented to the individuals who are instrumental in the purchase, preparation and intake process.
Agree, arrange and change
The nutritionist and dietitian will be responsible for providing information, options, assisting with choices, educating, training, and implementing the plan. These practitioners work with clients to commit to a plan, its time frame, and the demands. Consensus is essential to the success of the dietary plan.
The success of any plan will be determined by the client’s belief in:
- Readiness to take action
- Desire to be healthier (perceived severity of condition)
- Perceived benefit to the actions to be taken (benefits, psychological aspects, costs, and barriers)
In order for a change in behavior to take place, shifts in habits, attitudes and intentions must also occur. Following are some common elements of behavioral change essential to a successful plan:
- Understanding the health risk
- Understanding the health benefits
- Understanding the risks involved with not changing
- Knowing possible solutions
- Committing to an available, effective and efficient option
- Understanding the process and timing
- Developing a self-regulating system (stimulus control, reinforcement, support, modification, coping strategies, and relapse procedures)
- Exposing self to social learning models to imitate, model and observe others behaving in desired manner
Change requires time, commitment, and support. Teaching others to change established habits, and learn healthier ways of consuming food and fluids is not always easy; many barriers to change exist. Understanding the client’s habits, preferences, environment, cultural beliefs, and abilities are essential in the planning process. The client must trust, and be able to easily communicate with, the practitioner.
Many with Cerebral Palsy are prescribed liquid or semi-solid foods. Some are tube fed. This type of feeding assistance can be temporary or permanent, depending on the severity of the eating impairment.
Monitor and evaluate
Dietary practitioners realize behavioral change is not always easy to embrace. Nutrition and dietary plans may require purchasing different foods from different venues and preparing food in different ways. In addition, the plan may require food to be consumed in a manner that may require training, adaptive equipment, or the placement and use of feeding tubes. Dietitians will follow up with clients to discuss progress, identify stressors and reconfigure options. A successful plan requires focus on the goals, as well as an open communication process. It is always helpful to have supportive family and friends. Measurable goals that can be benchmarked and reported to those in the interdisciplinary team for plan feedback are also helpful.
Who provides nutrition and dietary counseling?
Practitioners who administer dietetic counseling and meal-planning services are likely educated in food and nutrition sciences, culinary arts, and food service systems management. They are trained in business practice (business, economics, computer science, and communication) and science (anatomy, biochemistry, chemistry, microbiology, and physiology), as well.
Nutritionists and dietitians are employed in many fields, including:
- Community and public health facilities
- Corporate wellness programs
- Correctional facility cafeterias
- Culinary schools
- Food and nutrition-related business and industries
- Government agencies
- Health care facilities
- Hospital settings
- Nursing homes
- Pharmaceutical companies
- Private practices
- Research programs
- School and daycare cafeterias
- Sports nutrition programs
- University centers
In the case of those with Cerebral Palsy, nutritionists and dietitians work as part of the multidisciplinary team of practitioners working together to minimize the impact of impairment on the digestive process. The nutritionist or dietitian will work with the following care plan team members:
- Primary care physicians
- Feeding therapists (occupational therapists, speech/language pathologist or physiotherapist)
- Pediatric dentist
What is the difference between a nutritionist and a registered dietitian?
Those in the industry often use the term nutritionist and dietitian interchangeably but they actually are significantly different. A dietitian, either a registered dietitian or a registered dietetic technician, is trained and accredited through college and university programs approved by the American Dietetic Association (ADA). ADA approved programs include those administered through the Commission on Accreditation for Dietetics Education (CADE) or the Commission on Dietetic Registration (CDR). In 33 states within the U.S., licensure is required for a dietitian and 46 states have laws governing the dietetic professions.
- Registered Dietitian (RD) – Accreditation includes:
- Bachelor’s degree – Bachelor’s degree from a university or college accredited through the Commission on Accreditation for Dietetics Education (CADE), the accrediting body from the American Dietetic Association (ADA).
- Complete practice program – Six-12 month supervised practice program at an accredited health care facility, community agency, or food service corporation.
- Pass national examination – administered by the Commission on Dietetic Registration (CDR)
- Specialize in various areas of practice (optional) – Certifications in programs that include diabetes education, nutrition support, pediatric nutrition, renal nutrition, or sports dietetics. These are accredited through CDR.
- Dietetic Technician (DTR) – Accreditation includes:
- Associate’s degree – Associate’s degree in an accredited college or university.
- Complete dietetic technician program – 450 hours of supervised practice experience in community program, health care, and food service facilities.
- Pass national examination – administered by the CDR.
- Nutritionist – Accreditation includes:
- A nutritionist is not always required to have a college level degree, nor always backed by a nationally recognized professional accreditation. States vary on their guidelines. In some states, the title “nutritionist” is completely unregulated. However, in some circumstances, a person with the title may have taken appropriate coursework towards the registered dietitian accreditation, but has not yet fully completed the required internship or pre-professional practice program. Some nutritionists are in the process of taking or passing the national examination towards the registered dietitian designation.
When there is state licensure, industry suffixes may hold differing requirements from state to state. Some titles commonly used within the industry include:
- Certified Dietitian (CD)
- Certified Dietitian and Nutritionist (CDN)
- Clinical Nutritionist
- Community Nutritionist
- Dietetic Technician Registered (DTR)
- Licensed Dietitian (LD)
- Licensed Dietitian and Nutritionist (LDN)
- Licensed Nutritionist (LN)
- Management Nutritionist
- Registered Dietitian (RD)
- Therapy Nutritionist
It is helpful, and recommended, that individuals understand their state’s licensure policies before pursuing dietary and nutrition counseling that fits their situation.
A person’s ability to transcend his or her physical limits is in no small part due to the kinds of therapies that are used to fine-tune his or her abilities. Therapy fosters functionality, mobility, fitness, and independence. The types of therapies vary based on a person’s unique needs, type of Cerebral Palsy, extent of impairment and associative conditions. Therapy can also help parents and caregivers.
Therapy for Cerebral Palsy includes
- Aqua Therapy
- Behavioral Therapy
- Chiropractic Intervention
- Conductive Education
- Intensive Suit Therapy
- Massage Therapy
- Music Therapy
- Nutrition and Diet Plan Counseling
- Occupational Therapy
- Physical Therapy and Physiotherapy
- Play Therapy
- Recreation Therapy
- Respiratory Therapy
- Sensory Integration Therapy
- Social Therapy
- Speech and Language Therapy
- Vocational Counseling