Investigating feeding difficulties in Dravet Syndrome

Lead researchers: Dr Lisa Clayton, Professor Sanjay Sisodiya

Partners: Chalfont Centre for Epilepsy

It’s common for people with Dravet Syndrome to have difficulties with feeding, swallowing and weight loss. For this research, we surveyed 65 families affected by Dravet Syndrome to explore these difficulties further.

Almost all of the people who responded to the survey reported that the person that they care for with Dravet syndrome had difficulties with feeding, and two out of five had a gastrostomy (also called a feeding tube or a PEG (percutaneous endoscopic gastrostomy)).

The research found that 88% of people caring for someone with Dravet Syndrome were worried before surgery for a gastrostomy, with over half (54%) saying there wasn’t enough relevant information to support them.

Post-gastrostomy, 88% of carers were happy that their child had had the procedure, with more than 90% reporting improved quality of life, and better overall health. 

The results show that asking about feeding difficulties, and monitoring weight, should be included when health professionals do a clinical review of someone with Dravet Syndrome. Health professionals should discuss the potential that someone with Dravet Syndrome may need a gastrostomy. This will help to reduce anxiety for families, and encourage shared decision making.