MAD Mama:  
The Modified Atkins Diet for Seizures
by Milena Casey

Turn fear into anger.  That is something that my husband always said whenever I got scared hearing all the horrible things the doctor told me about my daughter's prognosis.  It took me a while to understand what he meant.  But once I got it, I used it.  Fear is a negative feeling that makes you crawl into a ball and not move.  Anger is a feeling that can be turned into a positive one, using its energy to protect yourself.

It's anger that helped me find MAD, the Modified Atkins Diet for seizures.  



Jobyna's Story

I was scared because my daughter had so many seizures and no medicine could help her.  My three-year-old daughter, Jobyna, has an undiagnosed neurological condition and has had seizures since the age of four months.  Besides having grand mal and partial seizures, she also developed infantile spasms that caused her to have absence and myoclonic seizures as well.

We tried four different meds without any success.  Then we were asked to try ACTH, a seizure therapy with many side effects, for infantile spasms.  Jobyna ended up on life support.

I did my research and found the Ketogenic diet.  After consulting with Jobyna's doctors, they agreed.  Unfortunately, our insurance did not want to pay for the initiation in the hospital, which made it impossible to start the diet.  In the meantime, her seizures got worse and really interfered with our daily routine.


MAD

That's when I dug deeper and found the Modified Atkins Diet, MAD for short, for seizures.  This diet is similar to the Ketogenic diet but is less strict.  The Ketogenic diet has is a very strict protocol on measuring and weighing the exact amount of foods in every meal.  Every meal has to be eaten.  The protein, fat and carb ratios have to be the same in each meal.  This diet tricks the body into thinking it is starving, which causes it to produce chemicals called ketones that can reduce seizures.

The Modified Atkins Diet still tricks the body into producing ketones, but is much more flexible and can be started at home.  Usually, kids can take 10 to 15 grams of carbs, moderate amounts of protein and as much fat as possible.  There are no calorie or fluid restrictions, and food does not need to be weighed.  Dr. Eric Kossoff, the lead researcher for this diet, always says that the food has to glisten with fat.

Unfortunately, when we started the diet, there was little literature on it, no doctor or dietitian in my town knew about it, and there was no local support.  Once again, I turned my fear of the unknown into anger and researched, researched and researched until I stumbled upon a support group on Yahoo.  The families in this support group have many years of experience with MAD and many work closely with Dr. Kossoff.


Success!

After a month of giving my daughter butter lollipops and greasy foods her nighttime seizures disappeared!  For the first time in a year, Jobyna was sleeping through the night, with no seizures waking her up and keeping her awake.  Another month later we had 30 percent control over the seizures, and after six months of the diet we are up to 50 percent!  For many people this may not seem like a lot.  But if you deal with 150 seizures a day, 75 sounds a lot better.

Today, almost seven month into the diet, I was able to take Jobyna off two seizure meds and she has made great improvement cognitively and physically.  We are not out of the woods yet.  It is a journey and a long fight.  We might not ever be able to have 100% seizure freedom, but so far I am so happy to see my daughter doing so well.  Jobyna's success is common.  Studies have shown that 45% of children and adults had a 50-90% seizure reduction, and 28% had a 90% or greater seizure reduction.

MAD has given us hope and my daughter the ability to laugh and smile again.


For More Information:

If you are interested in starting this diet, please contact your physician and dietitian.  If they are unfamiliar with the diet, a good place to start is Dr. Kossoff's review of the diet and literature, "The Modified Atkins Diet," in Epilepsia 2008;49(supp):37-41.

Other Resources:

To learn more about Jobyna, visit her site at www.jobynacasey.webs.com

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 Author:  Milena Casey
 Date Uploaded:  7/21/2011