Ketogenic Diet

We started the Ketogenic Diet on November 14, 2011. 

We started at a 4:1 ratio with 300 calories per meal and 2, 50 calorie snacks.  After a few weeks, we settled in at 3.5:1 ratio with 400 calories per meal along with the 2 snacks.

You can read about our experience in the hospital starting here.

It took us about 3 weeks to become seizure free and we have maintained it now since December 7th. 

It is a lot of work and can be frustrating at times - but we feel like we have Ben back.  It's been called a "miracle diet" and we are witnessing the miracle everyday.

*Update:  the diet is proving to be ineffective for Ben.  The doctor had given us the OK to start a wean, but we wanted to be sure we had given it enough time.  We will keep going on the diet until Valentine's Day 2012.  At that point, we will make a decision about whether to continue or not.

**Update April 2012:  we have found seizure freedom!  The doctor can not tell us exactly what is helping Ben so we are not in a hurry to change anything.  We are enjoying this reprieve!

***Update April 2013:  we have successfully weaned the diet.  We are still maintaining seizure freedom with the use of depakote and felbatol.  Ben has been seizure free for 15 months!

Here is an article about the realities of this diet:  Epilepsy's Big Fat Miracle

1 comment:

  1. Hooray for seizure free! You have been on quite a roller coaster--speaking from experience--you are courageous wonderful parents, all that Ben needs.

    Our Nora started the diet about 1 month after Ben started, and we have experienced the same period of ineffectiveness after an initial period of seizure control. We found other resources that said to stick with it, and it's now working great for her (although we are always on alert for the next stumble). I am convinced that this diet requires tremendous patience and a constant eye on the long-term effectiveness. Their resilience against seizures will continue to becomes stronger the longer that we can help them through it. Way to go!