Wednesday, October 14, 2009

"What? She has to eat that?" The Ketogenic Diet Part 1

Mark and I did everything we could to help manage Karissa's Epilepsy. Starting at 2 weeks of age, Karissa was on phenobarbital, an anti-seizure medication that makes one act like a complete zombie. About 7 months after starting the phenobarbital, around November of 2005, she was weaned off. She remained seizure-free for about 9 months. After stopping the phenobarbital, she was an entirely different little girl, much more alert and bright-eyed.

I was so thankful that Karissa's seizures had stopped. Of course stopping the meds made me a bit nervous. I felt like I was always holding my breath. Always waiting for her to have a seizure. Anticipating it to happen. But, I kept trying to reassure myself that she had indeed grown out of it, just as her neurologist had said she would.

About 9 months later, towards the end of August 2006, Mark and I were awakened by Karissa around 4:30 in the morning. We weren't sure what was going on. We thought she was having a night terror. She was making weird shrieking sounds and we couldn't get her to stop. She didn't appear to be having a seizure though. It was frightening to say the least. I did everything in my power to comfort my little girl. Nothing worked. We ended up taking her to the ER. She was admitted and was started on 2  seizures meds, keppra and phenobarbitol. The neurologist had informed us that keppra could cause seizures. So why are we putting her on this med again? Anyways.

After a 4 day stay in the hospital, we returned home and everything seemed like it was back to normal. Things were going so well, Mark and I decided to still fly up to Napa, a trip that was planned before Karissa starting having seizures again. Mark's parents were going to watch Karissa while we were gone.

We get up to Napa, barely get into our room, and get a call that Karissa was taken by ambulance to the ER. Her seizures had started up again. Mark and I got the first plane back. Another 4 or 5 day stay in the hospital. The keppra was stopped and Depakene was added.

Karissa remained on anti-seizure meds for the rest of her life. She finally ended up on topamax and trileptal. We had always questioned the side effects of the meds. Did they decrease attention span, interfere with learning or have a negative impact on development? Was there an alternative to medications? These were all concerns that we brought to the attention of Karissa's neurologist. Oh, and I guess I should mention that we ended up changing Karissa's neurologist. We wanted the best. We wanted someone who would be aggressive. Anyhow, upon voicing our concerns to the neurologist, she suggested putting Karissa on the ketogenic diet. And that is where this post really begins...

1 comment:

  1. Bless your heart. I have typed out four different comments and I'll just be honest and tell you I don't even know what to say. I am just so sorry. I know we don't know each other but my heart aches for you and your loss of Karissa. I pray for you and will keep praying for you. I have a friend who lost her daughter at 5 and I just wonder if you would ever want to talk to her. You may have someone who knows what you are going through or you may not even care to talk to anyone who knows what you are going through right now. But in case you do, I would be glad to get her in touch with you. If you want to email me you can do that at Please forgive me if I am crossing a line and am imposing. I don't mean to be.