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In the May 8, 2012 issue ahead of press publication of the journal “Epilepsy Research” , Emma Williams, Jim Abrahams, Alison McGuire and Gerry Harris representing four different advocacy foundations dealing with epilepsy present fascinating personal accounts of how dietary therapies for epilepsy personally impacted their lives and those of their children who suffered with intractable epilepsy. All of these accounts are different; outcomes are not uniformly positive and the experiences varied depending on epilepsy syndrome. The four stories document Niamh diagnosed with migrating partial epilepsy of infancy who was fed through a jejunostomy tube (feeding tube) and how her parents overcame the obstacles to have as much time with their daughter as possible. Carson with infantile spasms was able to access a diet as a first-line treatment without ever taking medications. Matthew, who has Dravet’s syndrome was refused for the diet for years and was put on a whole host of different medications before being placed on the diet. Lastly, Charlie suffered with intractable epilepsy before his family found the ketogenic diet.

This account is a fascinating amalgam of very different perspectives on dietary treatment for epilepsy. It is a must read for both the casual lay person who may not understand how diet can serve as a benefit for seizures as well as the professional audience who can appreciate various approaches to diet can be in some cases life altering for individuals with epilepsy.

These stories are another powerful reminder of the variety of different approaches that are available for the treatment of epilepsy and how we should all keep an open mind in terms of promoting dietary options for patients with epilepsy in order to best improve quality of life.

by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com
Last Reviewed: 7/2/2012