I was born with cerebral palsy and had my first grand mal seizure at age 13. Multiple failed drugs, and different daily seizure presentations. For a period of 9 months I was on my hands and knees, unable to put a cohesive sentence together or follow even a sitcom. Because of the breakthrough seizures which started to get worse, my neurologist started bringing up the possibility of deep brain stimulation and cutting out the area of the brain causing seizure activity. (Scar tissue from stroke in utero- cerebral palsy)
I started looking for alternatives, and came across the keto diet for epilepsy. I started researching on my own as none of my providers knew the protocol. They ended up being supportive but not helpful in determining food choices, science research etc. I contacted your foundation a couple of years ago as I was just starting the ketogenic diet as a treatment of last resort for my own drug resistant epilepsy.
After 4 weeks of starting the ketogenic diet, all visible seizure activity ceased. Six months later, we started titrating off off Topamax over a 3 month period with no breakthrough activity. At 12 months I got the okay to slowly begin titrating off Keppra over the course of 5 months. I have since been off of all seizure medications for about 20 months, and seizure free for over two years. I am currently only using the ketogenic diet to control the seizures which at this point are non existent. A recent sleep deprived and strobe light EEG taken about 3 months ago shocked my neurologist. I had no seizure or preseizure activity and he told me in disbelief that my brain activity reflected that of someone who had never had a seizure or suffered from epilepsy in their life. He told me I made a believer out of him.
I am now 31 years old and just have gotten the all clear to transition off the diet. I have absolutely no seizure or pre-seizure activity and my doctor stated (in disbelief and awe) that that never happens, he usually sees some spikes in the sleep deprived state, and my brain behaved like that of someone that has never been epileptic. Wooohooo!As a result of all this, I’ve been left with permanent corneal nerve damage (which the keto diet has been helping with too!), as well as autonomic nervous system dysfunctions due to the brain body disconnection that 15-30 seizures daily for 15 years can cause.My quality life has improved since and is still getting better. Yes of course there are long term consequences and damage of having these daily simple motor, complex partial and vestibular seizures for years on end. There is also hope, and healing. I am coming up on my first full year back to work full time- as an IT systems analyst. I’m driving again, I live on my own, and have recently purchased my first home. I’m one of the lucky ones that was able to come back from the abyss, but at such a great cost.I will forever be thankful I found the ketogenic diet, but my emotions are still torn on the experience. So thankful, yet so frustrated, wishing I could have found this diet a decade earlier. I do hope that at the very least my story and experience can help others. The Ketogenic diet has saved my life, my body and brain and even my career. I am and expect to be seizure free for the rest of my life!