Growth and Nutritional Issues With Cerebral Palsy

Children with cerebral palsy often grow more slowly than their more typically developing peers. Sometimes this signifies a health problem that needs to be addressed and other times the slower growth is okay for a child with CP. Most children with CP whose growth raises concerns have problems with either feeding, severe motor impairment, or both. Children who have problems with feeding may get less nutrition than their body needs, and children who have severe motor impairments engage much less in the movement, play and exercise that supports muscle and bone growth. Growth problems in children who have CP may also be due to genetic differences or prenatal factors. The challenge is sorting out these issues for your child and determining what may need to be addressed.

Evaluation of Growth & Nutritional Status

When children go to their pediatrician, their weight, height (standing) or length (lying), and head circumference are measured and plotted on a growth chart that compares them to typically growing children of the same age. Children who do not grow as expected on this chart attract their doctor’s attention. When this happens, the doctors, dieticians and others investigate whether the child has a problem (like under-nutrition) that needs attention. For children with CP, particularly as they get older, reliable measurements of height and weight can be difficult to obtain. If they cannot stand by the age of 2 or 3, they have often outgrown the use of standard scales for younger children and instead require specialized equipment to weigh and measure them. These scales may only be available at larger children’s hospitals or specialized centers. Children with CP also may have contractures or scoliosis that make it difficult or even impossible to accurately measure their length (since these conditions affect the ability to lie straight).

When accurate measures cannot be taken or additional information is needed for growth assessment, there are a couple of alternative measurements that can provide helpful insight. To estimate height, a trained professional may measure specific areas of the body that can be used to estimate overall height (i.e. knee height or measuring length from elbow to wrist). To determine if a child’s weight is appropriate for their body size, dieticians also may use skinfold measurements- measurements of the fat under the skin. Since both of these approaches are less practiced than traditional measures, it is critical that a clinician who is experienced in evaluating growth and nutrition in CP interprets the information. Only an experienced professional can determine what these values mean and how this information will be used to make decisions about the child’s nutritional status.

Feeding Problems

Feeding, eating, drinking and swallowing are complicated. Every swallowed bite of food or drink passes just over the airway. Eating and swallowing requires significant coordination in order to prevent aspiration of food contents into the lungs. Children with CP may have multiple issues that interfere with this process. Some of these include decreased coordination of the mouth, tongue and throat (oral motor dysfunction or “dysphagia”) to manage various foods and liquids, inability to hold the head up, difficulty aligning the head with the neck and trunk to sit up, and trouble reaching for food or drink with their hands. In addition, some children with CP have other medical issues that complicate learning how to eat, such as chronic lung disease, congenital heart disease, short gut, gastroesophageal reflux, and even constipation.

Parents are usually the first to notice feeding problems. The most common symptoms in children who have difficulty feeding are prolonged feeding times, decreased intake, and slow weight gain. Less often, children choke and cough with feedings and are at risk for aspiration, under-nutrition, and breathing problems. If your child has feeding problems, feeding specialists can help you evaluate them. These specialists can include pediatricians, speech pathologists, occupational therapists, nurses, dieticians, gastroenterologists, earn/nose/throat doctors, and others.

Management of Growth & Nutrition Problems

Most management techniques for problems of feeding, growth and nutrition are non-invasive and straightforward. Management is based on assessment of the child’s growth and nutritional status and determining whether feeding is efficient and safe. Depending on age and feeding abilities, this may include: mashing, pureeing, thinning or thickening of foods, pacing of feeding, calorie boosts to foods, supplements (e.g. Pediasure, Ensure), seating aids, and special chairs. Physicians can also help manage medical problems that interfere with feeding by prescribing things like oxygen (for chronic lung disease), reflux medicines, and constipation aids.

Despite these management strategies, some children are simply unable to safely take in the needed calories for health and growth. When this happens your medical team will discuss placement of a gastrostomy (also known as a feeding tube or a g-tube). Placement of a gastrostomy is a tool to allow children and families to manage safe feeding and ensure adequate nutrition. Most children with a gastrostomy are able to continue to eat a little bit by mouth (e.g. their favorite treats). For some children the gastrostomy can be used just for liquids (which are often hard to manage safely) and medications, and to serve as “back up” for when children are ill.