Why this new chapter? Well, we found that most families found out in the past few years about the ketogenic diets, not from their neurologists, but from the Internet. There is a lot of good information out there from reputable sites that deal with epilepsy. The ketogenic diet parent support groups out there are growing in popularity, and their Web sites are usually the best places to get information and advice.
However, there’s just as much misinformation. Some Web sites may have good intentions but share information that might have been true for one child on the ketogenic diet, but is not true for most others based on medical literature. Web rings and chat rooms have a habit of sharing bad stories at an equal rate to successes. Unfortunately, there are also people out there willing to give miracle cures to desperate parents at a high price, with little medical backing and no perceived responsibility for the risk. Be careful.
In general, the Internet is your friend. We advise our families to surf with caution, though, and never make any changes to the diet without checking with your ketoteam first. All neurologists and dietitians are busy, and the rapid replies many parents get from chat rooms and blogs can seem better. However, always discuss any advice you get with your neurologist and dietitian. They might surprise you and say, “That’s a good idea!” They might also tell you that they’ve heard that advice before from other keto families and it led to disaster.
The Charlie Foundation (www.charliefoundation.org)
FIGURE 13.1
Courtesy of the Charlie Foundation.
The Charlie Foundation was formed in 1994 at the time of the first edition of this book and was the first ketogenic diet support group. Created by Jim Abrahams, a movie producer from California, his son Charlie was treated at Johns Hopkins and became seizure-free rapidly (see the foreword to this book!). His father was understandably upset at not being told about the ketogenic diet and then later being discouraged from using it. He created the movie First Do No Harm with Meryl Streep and helped support a 1996 Dateline NBC special. They also have supported research, such as a multicenter prospective study in 1998 (the first ever). The scientific advisory board of the Charlie Foundation meets annually at the annual American Epilepsy Society meeting in December and discusses how to continue to move the diets forward. These meetings have led to review articles and the 2009 expert consensus statement (see Chapter 11). The Charlie Foundation has also sponsored training sessions for many years for dietitians and neurologists and has been one of the major sponsors of the 2008 and 2010 international ketogenic diet conferences in Phoenix and Edinburgh, respectively. Beth Zupec-Kania has trained many international ketogenic diet center staff and runs KetoCalculator, used by many families on the ketogenic diet.
Matthew’s Friends (www.matthewsfriends.org)
Matthew’s Friends was created in 2005 by Emma Williams and is the ketogenic diet support group for the entire United Kingdom. They also have branches in Holland and South Africa. Emma Williams formed Matthew’s Friends along with many volunteers in response to her son Matthew, who had a similar experience as Charlie Abrahams. Matthew did well on the diet, and his mother created this support group to get the diet to more children not offered it previously. Similarly to the Charlie Foundation, they have sponsored many training sessions and the international ketogenic diet conferences. In addition, Emma has held parent days for both parents of children on the diet as well as those considering it—one in 2007 in London and 2010 in Edinburgh. Her Web site is full of useful information and updated frequently. They also have a scientific advisory board titled “KetoPAG.”
FIGURE 13.2
Courtesy of Matthew’s Friends.
The Carson Harris Foundation (www.carsonharrisfoundation.org)
This parent support group was created in Baltimore in 2007 by two parents, Gerry and Michael Harris, in response to the successful treatment of their infant daughter Carson at our center. Carson had infantile spasms and was offered the ketogenic diet as an initial treatment in addition to steroids and vigabatrin. The diet worked within days, and Carson was kept on the diet for 6 months total. She is now 5 years old and completely normal. The Harris family created the Foundation and ran a highly successful fundraiser (Carson’s FeelGood Fest, with Adam Duritz of the Counting Crows) to fund research related to the ketogenic diet. Gerry Harris also now runs our Johns Hopkins parent support group and, along with about 20 other families, will chat with families during their ketogenic diet admission week. Their message of encouraging neurologists to offer the diet much earlier in the course of epilepsy is at the heart of their Foundation.
FIGURE 13.3
Courtesy of The Carson Harris Foundation.
Epilepsy Cure Initiative (www.epilepsycureinitiative.ca)
This support group is based in Toronto, Canada, and run by Margaret Maye (a successful and incredibly talented opera soprano!) and her husband, Gary Neumann. Their son, now an adult with epilepsy, was treated by the family with the ketogenic diet mostly on their own using computer programs with some success. They are committed to promoting the use of dietary treatments in Canada and have sponsored and organized ketogenic diet conferences for parents and neurologists.
FIGURE 13.4
Logo is courtesy of ECI.
Japan (http://www2.ocn.ne.jp/~ketodiet/)
FIGURE 13.5 Courtesy of Hiroshi Maruyama.
Mr. Nakasuta, the father of a child with epilepsy who became seizure-free on the ketogenic diet, has created this group to increase awareness in Japan. Unfortunately, his son died several years ago due to an accident (not related to the diet). He has created a stunning recipe book in Japanese and is trying to increase awareness of the diet in Japan, especially to show that it can be adapted successfully to Asian lifestyles and food preferences.
Israel (www.oliversmagicdiet.com)
Talia and Eli Berger have set up a parent support group in 2010 in Israel. Their son Oliver has Doose syndrome and has done extremely well on the ketogenic diet. Their goal is to increase awareness and dietitian training in Israel. The Web site, www.oliversmagicdiet.com, can be translated on Google.com from Hebrew.
Internet sites
This is a partial list of Web sites that we have found helpful. Again, please check anything you read with your ketogenic diet team first before following any advice on your own.
A site run by Eric Kossoff, MD, on epilepsy.com (which has other useful information on epilepsy). Includes a bimonthly newsletter (archived), recipes, lists of ketogenic diet centers worldwide and links.
www.hopkinsneuro.org
Johns Hopkins Pediatric Neurology Web site, with information on the ketogenic diet, Atkins diet, the adult epilepsy diet center
www.ketocalculator.com: KetoCalculator program
www.facebook.com (enter the group for Friends of Hopkins Ketogenic Diet Group)
www.charliefoundation.org: The Charlie Foundation for Epilepsy
www.matthewsfriends.org: Matthew’s Friends
www.carsonharrisfoundation.org: The Carson Harris Foundation
www.atkins.com: Atkins Nutritionals Web site, with good tips and recipes
http://health.groups.yahoo.com/group/ketogenic/: Yahoo.com site
www.myketocal.com
Information on KetoCal™, a ketogenic diet formula supplement
www.epilepsyfoundation.org
Information about from the Epilepsy Foundation
modifiedmom.wordpress.com: created by a mother of a child on the modified Atkins diet
www.aesnet.org
American Epilepsy Society Web site
www.ilae.org
International League Against Epilepsy Web site
www.atkinsforseizures.com
A useful Web site created by the family of a child in our first pediatric Atkins study
www.specialcheese.com/bakedch.htm
Just the Cheese™ snacks
www.dukesmayo.com
High fat mayonnaise, very useful
www.bickfordflavors.com
No-carbohydrate flavorings
www.tomsofmaine.com
No-carbohydrate toothpaste
www.netrition.com
Useful for buying products, including MCT oil
www.carbsense.com
Makers of low-carb products with plenty of fiber; well-liked.
www.calorieking.com
Information on The 2011 Doctor’s Pocket Calorie, Fat & Carb Counter, a helpful resource for modified Atkins patients.