A parent's perspective on dietary treatments for epilepsy

Abstract

Four families gave their accounts of the how Dietary Therapies had impacted on their lives and that of their children who suffered with intractable epilepsy. All with very different stories, experiences and outcomes. Niamh was diagnosed with migrating partial epilepsy of infancy with an underlying metabolic problem was fed via her jejunostomy and the parents overcame every obstacle in their path to have as much time with their daughter as possible. Niamh's family now work with the Matthew's Friends organization to promote dietary awareness and make these treatments available for all those who need them. Carson, who with infantile spasms, was able to access the diet as her first line treatment without any medication being taken. Carson is the inspiration behind the Carson Harris Foundation and her family promote dietary awareness in USA. Matthew, with Dravet Syndrome, was refused for the diet for years, suffered brain damage and was put on a whole host of unsuitable medications before finally managing to get the diet. The diet proved his saving but what could have been the outcome if the family had got the diet when it was first asked for? Matthew is the inspiration behind the Matthew's Friends - Dietary Treatments for Epilepsy organization. Charlie, suffered with intractable epilepsy, was put on a whole host of medications that did not work and underwent brain surgery before finally getting to the diet that cured him of his epilepsy. He is the inspiration behind The Charlie Foundation in the USA and his father, Jim Abrahams made the film 'First Do No Harm' which told the true story of a child who was cured of his epilepsy using the Ketogenic Diet, just like Charlie and thousands upon thousands of other children around the world. The Charlie Foundation and Matthew's Friends work side by side in the promotion, education and funding of these treatments and have asked other family organizations to work with them so that families of the future will not have to struggle to gain the information that they so desperately need. Families have the right to make an informed choice and these organizations work together in order to be able to provide this.