Malnutrition rates in children with cerebral palsy are estimated at 46-90%.1 As a consequence of this malnutrition, these children often end up weighing less (and having a smaller stature) than their peers.  Even though children with cerebral palsy are typically smaller on average, the debate is whether this is actually what is best for them or whether we should be aspiring towards growth patterns similar to children without cerebral palsy.

Often when a child’s growth starts to falter, the paediatrician will raise the possibility of tube feeding the child.  Sometimes, there is little choice in the matter because the child’s swallow is so unsafe (due to dysphagia) for example, that taking food orally would result in numerous chest infections.  Other times, the decision is less straight forward and the family may seek a second opinion on whether anything else can be done to improve the child’s food intake and growth.

Eating habits and appetite are incredibly complex issues that can be influenced greatly by a number of other variables.  Many people think a dietitian’s job is just to tell people what to eat (or to recommend nutrition supplements or tube feeding), but I consider that to be a very small part of what I do.  In situations where a child (or adult) is underweight, my greatest responsibility is trying to figure out what is interfering with that person’s appetite or food intake.  If I can fix that, then sometimes the eating will take care of itself.

Here are seven things I look for when assessing a child who isn’t eating well:

1.  Dysphagia

At least 37% of children with cerebral palsy will have difficulty chewing and/or swallowing their food.1 The severity of the dysphagia is directly related to the level of gross motor impairment.1  If the child is already on texture-modified food and fluid (as directed by the Speech and Language Therapist), the next step is to make sure the family are providing a wide variety of foods and not stuck in a habit of just offering mashed potatoes and yogurt.

2.  Issues with the gastrointestinal tract – nausea, vomiting, reflux and constipation.

The gastrointestinal tract in children with cerebral palsy tends to move slower which can contribute to a variety of symptoms.  Up to seventy-five percent will have reflux and 26-75% will have constipation.1  Constipation can sometimes be managed by manipulating a child’s fluid and fibre intake.  Other gut symptoms can often only be managed with medication.  In all cases, appetite and food intake will be affected (sometimes quite significantly) until these issues are resolved.

3.  School

The school environment can have a huge, negative impact on a child’s eating habits.  School lunch rooms are busy and noisy with lots of distractions.  The allocated time for eating can be quite short (particularly for slow eaters) and sometimes children are too busy socialising with their friends to focus on the amount of food they are eating.  Children may not like the food which is being offered at school or if they require assisted feeding, sometimes they don’t like the way certain members of staff support them with this.  Children will not have access to snacks at school the same way they do at home, so their food intake may decrease.  School lunches are generally not fortified with extra calories the way a child’s food would be at home, so their calorie intake may decrease as well. Sometimes special parameters need to be put in place for a child to receive fluid and snacks at regular intervals and/or special, fortified food when at school.  Often, the involvement of a health professional is needed before schools will be open to implementing such strategies

4.  Behavioural/control issues or anxiety

Anxiety can greatly diminish a child’s appetite but other times, a refusal to eat may be a child’s way of exerting control in one area of their life where they actually have some control.  The input of a neuropsychologist can be helpful in these situations.

5.  Energy expenditure

A child’s food intake needs to match the number of calories they are using each day.  Is the child constantly moving?  Do they have contracture which will be burning more calories?  Are they frequently ill which will increase their calorie requirements?  Conversely, a child may have high energy needs but then be too fatigued from their activities to eat sufficient amounts (or their fatigue can make eating unsafe if they have dysphagia).  Sometimes the timing of meals and snacks need to be adjusted to accommodate this.

6.  Fatigue levels

Children may be fatigued for many reasons.  They may be restless sleepers or waking in the night due to pain or other reasons.  Sometimes an Actigraph can be helpful (if this hasn’t already been done), to analyse a child’s sleep pattern and determine how frequently they are waking up.  A psychologist can then analyse this data and provides a report with suggestions on how to get a child sleeping better.  Low levels of iron or vitamin D in the blood can also contribute to fatigue, so a blood test often needs to be requested as well.

7.  Food intake

Other than tube feeding, there are only three ways to get a child to consume more calories – a) offer them more frequent snacks and/or larger portions at mealtimes; b) add more calories to the foods and drinks they are already consuming (eg. full-fat milk; extra butter on potatoes); and/or c) offer oral nutrition supplements.  A dietitian’s role is to figure out which combination of these factors will be most effective.

As you can see, a thorough assessment and a multi-disciplinary approach is needed to help a child with cerebral palsy gain weight .  If you know of a child who would benefit from some dietetic input, please get in touch at info@specialistnutritionrehab.co.uk or 0121 384 7087.   Also, don’t forget to sign up for my newsletter below if you want to receive an email each month with my latest blog post.