June 10, 2024

New Research Finds Half of People Living with Dravet Syndrome Experience Feeding Problems

Article published by Epilepsy Society

A study has found that over half of children and adults with Dravet syndrome have experienced some form of feeding problem, with some reporting multiple issues. Dravet syndrome is a rare and complex type of epilepsy associated with difficult to treat seizures, as well as intellectual and behavioral difficulties. Around one in five 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 an additional five percent. Almost nine in ten 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 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.  Study leader Lisa Clayton, a Clinical Research Fellow 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 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.”