Epilepsy - Atkins for Seizures Support Groups
Online Groups Offer Resources on the Atkins Diet for Epilepsy
Mar 25, 2009
Both of these communities were founded by parents whose children participated in early studies of the modified Atkins diet (MAD) for epilepsy at Johns Hopkins. The half dozen research studies now completed show the diet can reduce seizures and is a promising new treatment option for hard to treat epilepsy. The online support groups provide much needed information and resources about the diet.
Atkins for Seizures
Michael Koski started Atkins for Seizures to promote the diet after his daughter, Brooklyn, made tremendous improvement while participating in a research study using the diet. Koski writes, "Through this diet, she became medicine free. She has 5 to 10 seizures a day down from 100 per day while on medication!"
The website features sections on recipes, recommended reading, articles, and links to low carb suppliers. Koski wrote an e-book about the diet which describes his family's experience and provides much needed information on how to plan and use the modified Atkins diet. The book is available on the website.
Koski sees a need to make professionals and the public aware that the Modified Atkins diet holds promise as a therapy for many people who have seizure disorders. He focuses on networking to share information about the diet, research studies, and resources through the internet.
Atkins4seizures Yahoo! Group
Michael McHugh founded this group to offer support and information to those using any form of the Atkins diet to manage seizures. His son, Avery, was in the original study on Atkins for seizures at Johns Hopkins.
At the time Avery began using the diet, the only online support available to his dad was through the ketogenic diet groups. The Atkins and ketogenic diets are high fat and low carbohydrate diets. However, McHugh stresses that they are not the same.
McHugh says, "I started the group because I was a member of the keto boards and realized how different our diet was, that there was a real need for something similar but more focused on Atkins only." This active community now has over 400 members.
Son Overcame Seizures on the Diet
McHugh's son is one of the modified Atkins diet's early success stories and McHugh wants other parents to know about this treatment option for their children who have epilepsy.
"Avery," says his dad, "had atypical absence seizures, he would have up to hundreds a day. They were long staring spells with some automatic movements too."
More than a half dozen anticonvulsants failed to control Avery's seizures. McHugh continues, "His prognosis was very poor. I had been told he was not a candidate for the keto because of his other neurological problems."
In search of another treatment for his son, McHugh contacted Johns Hopkins who told him about Dr. Eric Kossoff's research study using the Atkins diet. Avery was enrolled in the study and became seizure free while using the therapeutic diet.
Atkins4seizures has a very familial atmosphere. Parents can share advice on managing the diet for their children, and adults using the diet find community here also.
McHugh is pleased with the group, "Our group is just about the best support you can have, experienced parents who have been through the process and know about the ups and downs and the things the doctors and dieticians forget to tell you, or do not know enough to share."
The website has sections where members can upload files, recipes, links to resources, photos, or make physician recommendations.
Avery has been seizure free for over five years now and no longer needs to be on the special diet. McHugh continues to maintain the online group because, "I think there is a bit of a moral obligation to stay involved and help the new parents once you have your child's situation under control. I am very grateful for the parents who do stay involved and help me to answer the same questions, concerns, fears, etc., over and over again as new people come on board."
Through their online presence, Koski and McHugh work diligently to "get the word out" about the modified Atkins diet as a treatment option for epilepsy.
Resources:Atkins For Seizures
Atkins4seizures
Related Articles:
Epilepsy - Modified Atkins Diet Reduces Seizures
Epilepsy - Modified Atkins Diet Research
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