Is there a diet other than the ketogenic diet that helps prevent seizures?

Bobby's Mom - posted on 06/14/2011 ( 8 moms have responded )

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Hi There: Does anyone know of any diets that re more mild than the ketogenic diet that can help prevent seizures?

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Jennifer - posted on 06/23/2011

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The diet study at JH is not easy to get into and is much stricter than some other seizure diets. My daughter (6) has absence seizure since she was 4. We tried the Modified Atkins Diet aka MAD (http://atkinsforseizures.com). We did it thru her pedneuro and had to work with a nutritionist and she had to have frequent blood work and we had to do daily ketone check. The diet is basically a low carb high fat diet that can be very difficulty especially for children to maintain. It is a little tricky and takes a lot, I mean a lot of work on the parents part to research, document, food shop (trying to find special products and ingredients) food prep, this is all easy compared to trying to get your child to adhere to the diet. Also did I mention that this is a sugar free diet. Don't get me wrong it is completely doable and there is a wonderful support groups thru atkinsforseizures@yahoo.
We had some success but had to go on Lamictal prior to starting kindergarten and the school was wonderful making sure she adhered to the diet. Unfortunately we just never got 100% control. I have slowly weened her off the diet bc it was just to hard to maintain. But it can work and I know there are 100s of people that can come off medications and gain full control just with the diet.
If you have any questions I would be happy to answer them and give you all the info I have collected while on the diet.
Good luck!
Jennifer

Jennifer - posted on 06/23/2011

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The diet study at JH is not easy to get into and is much stricter than some other seizure diets. My daughter (6) has absence seizure since she was 4. We tried the Modified Atkins Diet aka MAD (http://atkinsforseizures.com). We did it thru her pedneuro and had to work with a nutritionist and she had to have frequent blood work and we had to do daily ketone check. The diet is basically a low carb high fat diet that can be very difficulty especially for children to maintain. It is a little tricky and takes a lot, I mean a lot of work on the parents part to research, document, food shop (trying to find special products and ingredients) food prep, this is all easy compared to trying to get your child to adhere to the diet. Also did I mention that this is a sugar free diet. Don't get me wrong it is completely doable and there is a wonderful support groups thru atkinsforseizures@yahoo.
We had some success but had to go on Lamictal prior to starting kindergarten and the school was wonderful making sure she adhered to the diet. Unfortunately we just never got 100% control. I have slowly weened her off the diet bc it was just to hard to maintain. But it can work and I know there are 100s of people that can come off medications and gain full control just with the diet.
If you have any questions I would be happy to answer them and give you all the info I have collected while on the diet.
Good luck!
Jennifer

Patia - posted on 06/18/2011

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My daughter was on the ketogenic diet for 2 years from age 7 to age 9. She was seizure free and medication free. She came off the diet and a year later had a shunt malfunction and developed a new kind of seizure. We re-tried the keto diet but could not get her into ketosis. So, we opted to follow the South Beach diet which is "low carb" as well but, not as strict. It has not relieved my daughters seizures but, we do notice a reduction in frequency of seizures when she is adhering to the south beach program. There's a doctor at Massachusettes General Hospital that has done a lot of work and study around the South Beach diet for adolescents and adults with epilepsy. I wish we could have gotten my daughter back into ketosis because she and I both feel life without seizures was worth the sacrifice. I wish you all the best and success in whatever treatment you persue.

Laurie - posted on 06/15/2011

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There is a modified ketogenic diet. My daughter was on it for four years. It was a Hospital for Sick Children research project, and it used MCT oil (modified coconut oil) and limited carbohydrates, to make it more palatable. We were watched pretty closely. We could still take my daughter out for dinner. I think I still have the binders with the technical stuff in it - ie. grams of fat, carb, protein per day. I'd have to take a look though.

Amanda - posted on 06/15/2011

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Check out JohnsHopkins online. They should have info on LGIT and modfied Atkins and seems like maybe one other. Also try AtkinsForEpilepsy.com (or .org, I forget which, sorry). You would also be able to get info for any of them at the charliefoundation.org resource page and community forum where the keto exopert moderator answers question, as well as on the yahoo groups "Ketogenic" parent forum. My 3yo is one yr into keto and we're seeing results if you wish to contact me with questions. I'll be glad to offer what I can. Blessings to you in your search, Amanda K.

Lori - posted on 06/15/2011

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I do not know of one, but through observation/experimentation ... found that my son seems to have less seizure activity if we keep his carb-protein ratio at a minimum of 1-3. The days he rebels and "carbs up" seem to be the day proceeding some heavy seizure activity. I also try to make sure he's getting some healthy fats - like olive oil - in his diet. Not a cure, by any means, but it does seem to make a difference.

Best luck and wishes!

Jen - posted on 06/15/2011

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Some hospitals have been testing the Atkins diet. I know Johns Hopkins is one. I do not know the progress or how it worked for the people involved.

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