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Making a meal out of good eating for life

In the final week of nutrition for children with special needs we look at the challenges parents of children with spina bifida and hydrocephalus face and how they can achieve a healthy lifestyle.

Spina bifida is a form of neural tube defect and 80pc of children born with spina bifida also have hydrocephalus, which is a build up of fluid on the brain.

Children with hydrocephalus can have issues that may affect feeding and eating in general because of how hydrocephalus affects perception and sensation.

For example, some children may have altered visual perception which can affect their ability to judge distance, size or speed.

Eating can be difficult if fine sensations in the hands is an issue which affects your child's ability to move food or drink from their hand to their mouth. Hydrocephalus can affect language and memory, which can then affect decision making and organisational skills.

There are several potential dietary issues children with spina bifida may face but one of the biggest is obesity. According to US reports, 50pc of children with spina bifida are obese. There are various contributing factors for this, including less activity as a result of reduced mobility.

For children with spina bifida, the implications can be serious. Aside from the potential to develop obesity-related diseases, such as diabetes and high cholesterol, there are other factors which can reduce your child's quality of life. Many children with spina bifida have reduced mobility as it is, whether they are in a wheelchair or not but excess weight can further hinder mobility. This in turn can limit their ability to be independent and take care of themselves. Wheelchair users can also develop unnecessary breathing problems or pressure on the skin. Breathing problems are caused as a result of extra weight around the chest area.

Weight that is concentrated around the chest can also cause bone abnormalities such as scoliosis, which creates a bend in the back, or kyphosis, which causes a forward bend. Kyphosis can be potentially dangerous because it can prevent the lungs from expanding properly, therefore restricting breathing. Extra weight will also put increasing pressure on skin in contact with seats or tight straps.

Because it is often difficult to measure height in children with spina bifida, this in turn makes it difficult to determine what a healthy weight is. According to the Irish Nutrition and Dietetic Institute (INDI), weight should be monitored regularly using a centile chart to ensure no rapid gains in weight. You can reduce the chances of your child becoming obese to offering them a wider choice of food from a young age.

Foods from the top of the food pyramid, which are especially high in fat and sugar, such as crisps, sweets and chocolate should be limited to once or twice a week. Although we all need to monitor our portion sizes, children with spina bifida may need to be monitored more closely as wheelchair users are less mobile than their peers and so they require less energy. Growth will also be slower than the general population due to paralysis of lower limbs which also reduces calorie requirement.

Some children, especially those with hydrocephalus, can appear to be 'fussy eaters'. According to the INDI, it is not known if this is related to the disease or a behavioural development.

Generally a broad range of food should be offered.