About two years ago, I was sitting at work, doing my daily grind when I received a frantic phone call from my daughter's preschool teacher. She said that something was wrong with Kaitlynn and that she was ready to call a paramedic. I calmly asked her to slow down and explain what had happened and as she did, I felt my heart sink. She was describing what was to be the first of Katie's grand mal seizures. I immediately took her to our local Kaiser to be checked but couldn't get in to see her pediatrician. We were given an urgent care appointment with the on-call nurse who said that she had had a fainting spell, nothing to worry about. Having been through this process so many years ago, I had the forsight to have Kaitlynn's school document what they observed and made sure that I had it with me. After arguing about it for a few minutes, I demanded a referral to neurology. The nurse claimed that it wasn't necessary. I insisted and we got the referral. Katie began with tests... an EEG, two MRIs and by then had had several more seizures. Her EEG showed very abnormal brain activity, especially in the right temporal lobe. Based on the seizures and the EEG, she was finally given a diagnosis and we began drug therapy within a few months. Unfortunately, the medication did nothing for her seizures. In fact, they began to become more frequent and severe as time went on. The further we went, the worse she got and the more the medication took her over. Within one year, she went from a happy, energetic little girl to a miserable, lethargic little lump. She would sleep 20 hours a day, was always whiny, couldn't articulate and at times couldn't even walk. Every time she would have a seizure, her neuro would tell me to up her dose. And every time, I would argue that she was getting worse and worse and that there was something wrong! But, he always convinced me that she would "level out" and get better. On June 14th, 2000, Kaitlynn finally overdosed on her meds and was taken via ambulance to the emergency room. She had cluster seizures for an hour and a half and nearly died. Afterword, her neuro STILL did not want to decrease her medication but I did anyway by taking her getting her completely off her secondary drug (Tranxene). She immediately got better and when the neuro found out, said "well great, I'm glad I could help." This man doesn't even remember his patients, let alone what treatments he recommends! I began looking into different treatment options for Katie as drugs were not working at all. I thought about VNS for her for about a day and then decided to try something a little less evasive. I did a lot of research on the Ketogenic Diet and found that there was a Kaiser hospital in Hayward that offered the program. After a two week battle with her neuro, I finally got a referral to take her in to the hospital for a week and start the diet. I will tell you that everything you may have heard about the diet is true... it's high fat, low carb, no sugar... filled with things like mayonnaiser, heavy whipping cream and butter. There are times when I'm preparing her meals and I think to myself "I would gag if I tried to swallow this." But for all it's grossness and all the time and effort that it takes to prepare meals, there is a very positive side to the diet. IT WORKS!!! Katie has been on the diet for 28 weeks and has been seizure-free for 28 weeks. She's also been able to completely withdraw from her medications and has been drug-free for 13 weeks. She is very proud of her diet and understands that she's doing it to make the seizures go away. With any luck, it will continue to work for her and after three years, we hope that she will be able to remain seizure-free for the rest of her life.
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Karole's Story
Cyberonics
Epilepsy Foundation of America
