I HATE Seizures

Thursday, April 30, 2009
Well it is the last day of the month and as I sit in bed waiting for Kennedy's feeding pump to beep at me I begin to think about the last week or so. My life has changed so much - for the better that is (I will blog about that later)! However, one thing that remains the same are these damn seizures! We are on a new medication plan - yes, you heard me....another new medication plan. For those of you who are keeping track this is the 6th medication change we have made to try and control Kennedy's seizures. And to-date we still have had no success =(

I began to notice Kennedy's seizure activity increasing about two weeks ago. Brian and I began to monitor them to ensure they were not getting out of control. They were becoming more prevalent and were beginning to wake her from a dead sleep. I called the Neurology Dept. on Tuesday, and after three subsequent phone calls, I finally got a call back on Thursday (Thank god it wasn't an emergency)! The nurse informed me that Dr. Michelson wanted to switch up her meds - which was no surprise to me. I swear sometimes I think if all else fails they just add another medication. We were going to stop taking the Trileptal and Keppra and gradually begin Kennedy on Lamictal. I was given the same old statement "We will just have to keep trying different meds until one works"! Sometimes it would just be nice if something worked the first time around. She loves being a Medical Mystery!

As I was reviewing the medication schedule with the nurse I was happily suprised to be informed that Dr. Michelson is recommending Kennedy to be on a Ketogenic Diet. This is a diet that mimics Atkins - It is very high in fat and low in carbs. It makes your body burn fat instead of carbs. Normally your body takes the carbs and converts them to glucose which travels through the body and is fuel for your brian. With this Ketoginic Diet your body is tricked into thinking you are starving thus forcing your liver to burn its stored fats. The liver converts these fats into Ketones which travel to your brain and replace the glucose. The brain then uses the Ketones for energy creating a Ketosis state. From this state your body creates it's OWN anticonvulsant which is said to treat Refractory Seizures (seizures not easily treated with medication). Dr. Michelson will present Kennedy's case and hopefully the team will accept Kennedy for this treatment. It will require a week hospital stay but it could have profound effects.

We begun our new medication on Friday at a very low dose. We are currently taking 5 mg 2 times a day and we need to be at 25 mg 2 times a day. As expected Kennedy is having some pretty bad withdrawals; sweating, fussiness, crying, irritability....As of Tuesday, she is finally coming back into her own - Thank God! The medication seems to be working so far. Her seizures are not as severe - so hopefully as we keep increasing the medication dosage each week the episodes will dissipate.

Well I guess I should get to bed - Happy Friday =)