New research finds half of people living with Dravet Syndrome experience feeding problems

A study that was jointly funded by the Epilepsy Society has found that over half (52 per cent) of children and adults with Dravet Syndrome have experienced some form of feeding problem, with some reporting multiple issues.

Around one in five (17 per cent) of the people with Dravet Syndrome involved with the study had a feeding tube, known as a gastrostomy, and this course of action was being considered for a further five per cent. Almost nine in ten (88 per cent) caregivers who were interviewed said they were worried about their child having a feeding tube before it was inserted, but a similarly high proportion reported after the procedure that it had improved their child’s ability to take medication, overall health and quality of life.

The researchers for the study, which we co-funded with Dravet Syndrome UK, concluded by highlighting the need for health professionals to discuss feeding difficulties with patients and caregivers during review appointments, and the importance of exploring and discussing gastrostomy as an option where appropriate.

The study was led by Lisa Clayton, a Clinical Research Fellow and Neurology Registrar who is based at the UCL Queen Square Institute of Neurology and our Chalfont Centre. She said: “We found that feeding problems were common in people living with Dravet Syndrome and can emerge at any age. Severe problems with eating can be particularly worrying for caregivers as it can affect both nutrition, hydration and giving medicines to the person they care for. It is vital that health professionals have early discussions with caregivers about feeding issues to avoid unnecessary delays in intervention if needed.”

Dravet syndrome is a rare and complex type of epilepsy that affects around one in every 15,000 people in the UK. Seizures usually begin in the first year of life, with additional characteristics emerging typically from the second year onwards. 

This syndrome is often associated with difficult to treat seizures, intellectual and behavioural difficulties and a range of other problems. Dravet syndrome is lifelong, though different aspects may emerge or change as time goes on.