Breakers

Benjamin started the ketogenic diet back in early June. He became seizure free after one week. One day shy of one month I sent out a "universal" e-mail to family and friends sharing with them our joy and gratefulness...the very next day he had his first breakthrough seizure. We are now officially three months into the diet, which is typically the "trial" period that keto centers would like you to commit to in order to determine if the diet is working for you. We have had three "series" of breakthrough seizures. The first two times I reacted...the first series, we added back medication we had been weaning; the second, we upped the ratio from 1.5:1 to 2:1...both changes stopped the seizures...or did they? In both instances the seizures ceased the very day I initiated the change. We have now had a third "series" of breakthroughs...and we have done nothing...and they stopped.

 Sooooo many thoughts.

 It is very difficult to remain still in the midst of a storm, my first reaction is to "Batten Down the Hatches!" It is against my nature to "wait and see," but our experience with epilepsy is it has been a slow and agonizing process of wait and see." I am thankful to the Facebook support group, Ketogenic Parents ROCK!!! It is there that I read over and over again how teething can cause breakthrough seizures and was encouraged to stay the course with the diet. Did I mention Ben is teething something fierce?

We are gathering what information we can for when he has a series of breakthroughs we also see an increase in coreoathetoid-type movements with him. This time around we are also seeing a strange arm...I don't even know what to call it..."twitch," which we believe may also be seizure activity. So he had a routine EEG yesterday, and today we will go for bloodwork.

Do I think the diet is working? Definitely. I have to remind myself, often, (this diet is a lot of work!) that the fact I am concerned about breakthrough seizures is because the diet is working. Ben has never been seizure free prior to this diet. Since starting the diet and giving his brain a break from daily seizure activity, he is able to reach and grasp for toys, smile and laugh, sit up in his bumbo without falling backwards, play games with me like "peek-a-boo" and "fishy face," he can maintain eye contact so much better and respond to his name...there is no doubt that the quality of his life and ours is so much better.

My "diet" this last week has been from psalm 62:
     My soul, wait thou only upon God; for my expectation is from Him. He only is my rock and my salvation: he is my defense; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God. Trust in him at all times; pour out your heart before Him: God is a refuge for us!