My son Bryce was a perfectly normal, healthy boy until he suffered his first seizure shortly after his fourth birthday. I still remember the day vividly. I was at work when the director of his preschool called to tell me. I ran to my car, leaving an office full of patients behind and barely stopping at traffic lights. When I arrived Bryce was post-ictal (the period of confusion that typically follows a seizure). Although I didn’t witness the seizure myself, I knew it was real. He spent the night at our local Children’s Hospital. There Bryce has his first EEG, which was normal except for mild slowing. He had an MRI of the brain and many laboratory tests which were thankfully normal as well. My husband and I clung to the hope that this was an isolated incident and would never recur. We were wrong.
Three weeks later Bryce had another seizure at daycare and was placed on medication. He suffered many side effects from the medication, including abnormalities with his blood counts and behavioral issues such as biting, kicking and spitting. He was also affected cogitatively. He was slow to find his words, his writing and drawing regressed and he even fell asleep in the middle of his cousin’s birthday party. To make matters worse, the seizures didn’t stop. Bryce initially had tonic seizures. The first time I actually witnessed a seizure myself was one of the most horrific events I’ve ever experienced. To see your little boy writhing on the floor, muscles contracted, eyes deviated, drooling and unresponsive is like having someone reach into your chest and rip out your heart. As a parent, even as a doctor-parent, you are helpless.
I was already four months pregnant with our daughter Grace when he had his first seizure. Two months into his illness, his seizures began to spiral out of control. One morning at breakfast, his fork suddenly flung out of his hand over his head. I vaguely remembered learning about myoclonic jerks in medical school and recalled they were often associated with epilepsy syndromes. I knew it wasn’t good. Bryce also started having atypical absence seizures. He failed five medications, including three at once. His physicians thought he had Lennox-Gastaut Syndrome. I cried. Then I read about Lennox Gastaut in my medical journals and I cried some more. I read that the best outcome to hope for in a child with Lennox Gastaut is to some day live independently in a group home. Most children become mentally retarded. This was by far the most stressful time in our lives.
While Bryce was having a 24 hour video EEG, we were watching Disney movies with him. But on TV, there was a Dateline NBC special featuring Charlie Abrahams, who was cured with the ketogenic diet. My parents recorded it for me. I had heard mention of the ketogenic diet in passing in medical school, but really knew nothing about it. So I read some more. The more I learned about the diet, the more I believed it was our best option for Bryce. We had to wait about three weeks before the hospital had an opening for Bryce to be admitted to start the ketogenic diet. During that time, I began to reduce the carbohydrates in his diet and started to introduce foods on the diet, such as macadamia nuts, heavy whipping cream and blueberries. His seizures improved. Bryce was having up to 25 seizures daily before we started the ketogenic diet. Within three weeks, he was seizure free. Bryce was maintained on the diet and one medication for a year, then the diet alone for another year. He was weaned off the diet in the summer of 2005. Bryce has been seizure free, medication free and on no special diet for four years and counting. Rather than becoming mentally retarded as was his prognosis, he just completed third grade with straight A’s. Bryce is a true modern day miracle!
I still thank God daily for curing Bryce through the ketogenic diet. In my book “The KetoKid: Helping Your Child Succeed on the Ketogenic Diet” I give specific examples of how to cope with the emotional changes of the diet, and many tips for making the diet easier on a daily basis. The ketogenic diet gave me my son back. While the diet was trying at times--both for Bryce and for our family--I can honestly say that every ounce of effort was worth it. I think that the utmost challenge to the diet is actually learning about it! If you have a child with uncontrolled seizures, the ketogenic diet is the greatest gift you could possibly give them.