Growth and Nutrition Issues

Around 60% of people living with Dravet Syndrome show some growth and nutrition issues.

These include:

• problems with swallowing, eating, appetite or absorbing nutrients
• ‘failure to thrive’, which means they are small, underweight and grow slowly
• osteopenia, which is a loss of bone density that weakens bones
• scoliosis, a curvature of the spine

Difficulties with eating, drinking and swallowing vary from person to person. There are several possible causes, including side effects from medication, seizure activity and autism.

Assessing growth and nutrition issues

One of the first steps to assess growth and nutrition issues in someone with Dravet Syndrome is to weigh them. If their weight is normal for them, there’s less need for concern about eating or diet. However, if their weight is too low or too high, it’s a good idea to speak to their medical team about investigating possible reasons for this.

In the video below, Dr Andreas Brunklaus, Paediatric Neurologist, discusses different approaches to ensuring good nutrition in people with Dravet Syndrome who have eating difficulties.

Tube feeding

Sometimes problems with eating, feeding, swallowing or weight loss can become severe. In these cases, a gastrostomy may be an option. A gastrostomy is a surgical procedure for inserting a feeding tube through the abdomen wall and into the stomach.

This can sound like a frightening and drastic measure. But it can bring many benefits and help reduce some of the anxieties caused by concerns with eating and nutrition.