Stories & Impact Stories Ben's Story “A month after Ben’s first tonic clonic seizure we found him at the bottom of the stairs unconscious, fitting and with a nasty head injury. In the months that followed his seizures increased and we received a diagnosis of Doose Syndrome*. I cried for three days. The prognosis was not good and the future looked bleak. Ben was having around four hundred seizures a month despite taking four anticonvulsant drugs. He broke his leg during a violent seizure, suffered various head and facial injuries and had bitten through his tongue countless times. Ben had to wear a helmet all the time to protect his head and was so poorly he could barely walk fifty yards. He lost a lot of his speech and cognition and slept for most of the time - we felt we were losing our precious boy. We were given a referral to try the ketogenic diet under the care of Jane Davison, a Daisy Garland funded Ketogenic Dietitian. Within a month of being on the diet we were given permission by his medical team to wean Ben’s first med! The more meds we weaned the less seizures he had and the better he became. After seven months on the diet we began weaning his final med (Epilim) and for us this was the turning point. Ben’s seizures reduced even more and we saw a return in his energy levels, speech and cognition. A week after his final med was weaned Ben became seizure-free! After a month with no seizures we removed his helmet. Ben is now drug-free, diet-free and seizure-free. He is a very happy boy who has lots of friends and is doing well at school. The ketogenic diet was the miracle we were hoping for and we would strongly urge parents thinking about trying the diet to request an urgent referral from their consultant. Don’t wait any longer, put in that call today!” * Doose syndrome, is an epilepsy syndrome of early childhood, most commonly appearing between ages one and five and featuring generalized seizures. Children will experience drop attacks and staring seizures, sometimes associated with falls.