Growth and Nutrition Concerns

These cover a range of issues, including a so-called ‘failure to thrive’ (underweight, slow growth, small stature), osteopenia (poor bone density), scoliosis (curvature of the spine), and problems with eating, appetite or with the absorption of nutrients. 

Each child is unlikely to get all of these issues, but around 60% of children with Dravet Syndrome show some growth and nutrition issues of varying extent. In the video below, Dr Andreas Brunklaus discusses different approaches to ensuring a good nutrition in Dravet children with eating difficulties, including referral to a dietician as a good first step, and the benefits of a gastrostomy (feeding tube) in certain cases where eating difficulties are more severe. 

Brunklaus Growth and Nutrition

Ketogenic Diet

Some individuals with Dravet Syndrome benefit from a medically prescribed 'Ketogenic' diet. Find out more here.

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Dravet Stories - Jessie's Journey

Read about Jessie's Dravet journey, as told by her mum, Rachel. Due eating difficulties associated with the medication she was taking for her Dravet Syndrome, Jessie was on the ketogenic diet for around four years and is fully tube fed. Despite the challenges she's faced, Jessie is a happy teenager!

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