Cerebral Palsy Awareness Month The Challenges of Feeding

Written by Tracy S. Williams, BS, Nutrition Educator. 

Learn more about Tracy at Tracy's Plate

World Cerebral Palsy Day

Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies”- disorders that impair movement due to damage of the developing brain. CP usually develops by age 2 or 3 and is a non-progressive brain disorder, meaning the brain damage does not continue to worsen throughout life. However, the symptoms damage often changes over time- sometimes getting better and sometimes getting worse. CP is one of the most common causes of childhood disability.

About 10,000 infants are diagnosed with CP and up to 1,500 preschoolers in the U.S. are recognized as having CP each year. The United Cerebral Palsy Association estimates that more than 764,000 Americans have CP. Congenital cerebral palsy caused by a brain injury during a baby’s development in the womb is responsible in about 70% of the children who have the condition. It is present at birth, although it may not be detected for months. An additional 20% have congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown, however, some possible causes are:

An infection during pregnancy may damage a fetus’s developing nervous system. They include rubella (German measles), cytomegalovirus (a herpes-type virus), and toxoplasmosis (an infection caused by a parasite that can be carried in cat feces or inadequately cooked meat). Other undetected infections in pregnant women are being recognized as an important cause of developmental brain damage in the fetus.

· Severe jaundice in the infant. Jaundice is caused by excessive bilirubin in the blood. Normally, bilirubin is filtered out by the liver. Often, newborns’ livers need a few days to start doing this effectively, so it’s not uncommon for infants to have jaundice for a few days after birth. In most cases, light therapy clears up jaundice and there are no lasting health effects. In rare cases, severe cases of jaundice can damage brain cells.

· Rh incompatibility between mother and infant can be a cause of cerebral palsy. In this blood condition, the mother’s body produces antibodies that destroy the fetus’s blood cells. This leads to jaundice may cause brain damage in the newborn.

· The physical or metabolic trauma of birth can be a cause of cerebral palsy. This can produce brain damage in a fetus whose health has been threatened during development. Severe oxygen deprivation to the brain or significant trauma to the head during labor and delivery can be the cause of cerebral palsy.

Feeding Skills

Feeding skills have been cited as a contributing factor that can affect the life expectancy of those with CP. Managing these can positively affect the life span of an individual with cerebral palsy. When people with cerebral palsy have feeding and digestive challenges, a nutrition care program can be beneficial. Skilled registered dietitian nutritionists work with physicians to adjust diet, food intake and nutrition supplements to enhance overall health. Effective dietary therapy can be devised to meet the individual’s unique needs taking into account digestive challenges and the ability to properly chew, swallow and self-feed.

Nutrition practitioners can adjust textures and consistency of food by pureeing, chopping, and grinding foods for a smoother eating experience. Foods can be softened with broth, gravy, milk, or juices. Liquids can be thickened to improve swallowing. Self-feeding is a skill that significantly enhances the quality of life for someone with a disability, although caregivers, family or friends may still be needed. Speech therapists can teach patients, their friends, or caregivers about adaptive feeding tools that can accommodate different levels of ability. Appropriate techniques can include space between feedings, to allow for natural swallowing, or feeding smaller portions throughout the day. In the most severe cases, some people with cerebral palsy rely on a feeding tube for partial or total nutrition intake. It is important to adjust to allow sufficient time between bites and drinks for natural swallowing. Some meals should be scheduled around medication times to avoid stomach upset, curb appetites and address feelings of being tired.

If a person with cerebral palsy has trouble with asphyxiation, reflux, or pneumonia, he or she should avoid foods, such as nuts, seeds, and hard or stringy foods. Diets can be changed to provide more calories, better balance, compensate for deficiencies and enhance digestion. Vitamin, minerals, and food supplements may help with malabsorption or who tire when eating. High fiber choices can curb constipation while prune and apricot juices may provide natural laxative qualities. Some people with cerebral palsy need to control drooling and aspiration, in addition, use long-term anti-seizure medications can contribute to an increased risk of tooth decay, cavities, gum disease, and bacterial infections. Dietitians may advise substituting added sugars and carbonated drinks with fresh fruits and vegetables. Dentists will encourage proper dental hygiene like regular brushing, drinking fluorinated water and regular checkups

Many people fight stereotypes and those with disabilities are no exception. Barriers individuals with disabilities face begin with people’s attitudes that are often rooted in misinformation and misunderstandings of what it’s like to live with a disability. One misconception is that all people living with disabilities are brave and courageous, but people with disabilities just need to adapt to a currently different lifestyle. Sometimes wheelchairs are used as typical mobility devices rather than for people who are only ill or sickly. In past decades, segregating people with disabilities in separate schools and institutions reinforced the perception that people with disabilities could only interact with others who have disabilities. Any person who does not have a disability can offer assistance, but most people with disabilities prefer to take responsibility for their own care when physically possible both in the community, within all parts of society. It is okay for curious children to ask questions about disability. Discouraging curious children from asking questions teaches children that having a difference or disability is wrong or bad. Many people with a disability will not mind answering a child’s question. People with disabilities go to school, get married, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, plan and dream about their future like everyone else. It is important to encourage participation from people with disabilities by providing accessible meeting and event sites. It is important for advocates to speak up when negative words or phrases are used for people with a variety of disabilities.

Cerebral palsy can affect someone who has it in a variety of ways. Some people with cerebral palsy can be impacted by having the limited verbal ability, limited cognitive ability, all four limbs affected or just their legs impacted. Some people use one cane or crutch; some people use a walker or two crutches. Some people use a manual wheelchair or motorized wheelchair. Some people may have some nutritional issues due to some difficulty feeding themselves or having digestive issues. You may have met one classmate, colleague or friend with cerebral palsy, but that does not mean even everyone is impacted in the same way by the same diagnosis. All people with disabilities deserve the same level of respect and it is important to help those with disabilities advocate against social misconceptions.

Resources
1.  CP NOW nonprofit & CP Daily Living

2. United Cerebral Palsy