A summary list of the best web resources on the ketogenic diet, epilepsy and related subjects.
This section provides links to other sites. These sites have been selected because they are rich in links to relevant information, or contain specialist information.
More detailed resource lists are provided under individual subject headings.
The ketogenic diet
The way an e-mail list works is simple. You subscribe to the list, this allows you to receive e-mail from the list and send e-mail to the list. The list server takes your e-mails and then sends them to everyone else on the list.
In the beginning, there was one ketogenic diet list, which was the source of practical information about the ketogenic diet; by parents, for parents. It was essential reading for anyone using the diet, providing up to date information on the use of the diet and its problems, as well as support and human interest. Sadly, the list has now split into two competing lists.
The ketogenic diet list
The original list is maintained by Rick Loek. It has fewer subscribers than the newer list, but its technical standard is probably higher.
The ketogenic diet support list
This is "a support group to help parents, family members, and care givers with the Ketogenic Diet to help control epilepsy". It currently (January 2003) has about 280 subscribers.
You can take your choice between the two lists, or join both.
KueKids ketogenic diet homepage
KueKids (Ketogenic and uncontrolled epilepsy kids in dire straits) is an Australian site, with a variety of information about the ketogenic diet.
Stanford Ketogenic Diet Program
Stanford operate one of the best organised ketogenic diet programs at the Lucile Packard Children's Hospital. The web site is just as good. It contains a variety of information on the ketogenic diet, including the diet protocol used at Stanford. There is a list of ketogenic diet centres (almost exclusively in the US), and a list of the carbohydrate content of various common medicines.
The Charlie Foundation
Established by Jim and Nancy Abrahams in 1994 to inform people about the ketogenic diet and to help find a cure for epilepsy. Charlie Abrahams suffered from infantile spasms, which have been controlled by the ketogenic diet. The Charlie Foundation has been largely responsible for re-establishing interest in the diet; it provides free videos on the diet, and was responsible for " Do no harm ", the television film about the diet, starring Meryl Streep, which dramatises the experiences of the Abrahams family.
Freeman JM, Kelly MT and Freeman JB (1996).
The epilepsy diet treatment: An introduction to the ketogenic diet.
New York, Demos Publications ISBN: 0939957868
The ketogenic bible encapsulates the experience of John Freeman and Millie Kelly at Johns Hopkins.
Infantile spasms mailing list
"A list for parents and care-givers of children with infantile spasms to discuss their children, treatment options and to offer support. Professionals are also welcome". Started by Jan Silbermann.
This excellent site is maintained by Sarah Blake. It provides comprehensive information about all aspects of epilepsy and its treatment. It has a lot of information and a great many links and is a good place to start if you want information about almost any aspect of epilepsy.
Epilepsy in young children
Contains the stories of over 1,400 children (January 2003) with epilepsy, giving a history of their medical treatment. It is run by Rob Evers, whose daughter Kinsey was diagnosed with Epilepsy when she was not even 4 months old.
Each child has a single page of their own. That page lists details about that child, their diagnosis, other health related problems, their treatments (medication, surgery and alternative treatments) and personal comments. There are three ways you can find stories. You can see all the stories by going to the list of children, the children are ordered by their age or you can start with a list of diagnoses; finally there is a list of the treatments reported in one or more of the stories. There is also a mailing list associated with this site.
West Syndrome Support Group
If live in the UK and your child has infantile spasms (sometimes known
as West syndrome) then you should visit this site and find out about the support
group. Unfortunately, it does not have a very positive view of the ketogenic
diet - "Although ketogenic diets may help control epileptic seizures in
older children who had infantile spasms to begin with, this form of treatment is
generally not used for infantile spasms themselves."
This is a UK site which contains a discussion group and a considerable number of links, although these are not described or classified.
This is the new name for the British Epilepsy Association which was set up in 1950 to raise awareness of epilepsy. Its members include people with epilepsy, their families and friends and the health professionals who care for them. It operates the Sapphire Nurse scheme to appoint epilepsy specialist nurses in hospitals around the UK.
The site contains information about the activities of Epilepsy Action and
about epilepsy in general, particularly relating to the UK.
Epilepsy Action now features more information about the ketogenic diet although it remains cautious - "Some children with certain difficult to treat forms of epilepsy may be helped by going on a high-fat diet called a ketogenic diet. Unfortunately it's often difficult to follow and can make your child feel unwell, but it can be worth trying if your doctor recommends it."
National Society for Epilepsy
The National Society for Epilepsy has been operating in the UK for over 100
years providing a variety of support services for epilepsy.
The site contains information about the activities of the NSE and about epilepsy in general, particularly relating to the UK.
The NSE now features more information about the ketogenic diet although it remains cautious - "The diet has been shown to help control seizures in some children, however not all children respond to it. If it is successful in controlling seizures, the doctor may decide to reduce or gradually withdraw medication. Due to the complexity of the diet and the difficulties involved in maintaining it, it is only considered where medication has been found to be ineffective."
Internet resources for special children
This web site run by Julio Ciamarra is dedicated to communicating information relating to the needs of children with disABILITIES on a global basis. It has a wide range of web links to many topics relating to disabilities.
Mothers From Hell
"Mothers From Hell is a loose-knit (more like velcroed--who has time to knit?) group of women who staunchly advocate for the rights of our children with disabilities. Don't let our name scare you; contrary to the suspicions of many school district personnel, we do not worship the devil, nor do we tolerate violence as a means of enforcing our children's legal rights. Our common bond is our children, all of whom have disabilities of one form or another... autism, cerebral palsy, Down syndrome, Enigma syndrome and DNOS (disorders not otherwise specified)."
return to The Ketogenic Resource
(update 5.2: 28 February 2003)
(issue 5: 27 January 2003)