Brandon had his first afebrile seizure on August 30, 2009. We were on a family vacation and getting ready to go to breakfast when he just fell over onto his older sister while having a tonic/clonic seizure. At that moment, although we didn’t know it yet, our lives were changed forever.
One seizure turned into two and then three and then non-convulsive status. We spent most of September 2009, in and out of 3 different hospitals. Brandon was put on Phenobarbital, trileptal, depakote, keppra and zonegran to try to find something that would control the seizures. Not only were the seizures not controlled, but he started having other types of seizures, including myoclonics, atonics, drops and absence seizures. After a tentative diagnosis of Doose Syndrome, we were sent home on depakote, keppra and zonegran.
The tonic/clonic seizures appeared to be controlled but Brandon was still having 20+ drops and myoclonics a day. I had to pull him out of school and out of all of his other activities. Everything in our lives changed. I was afraid to be alone with Brandon. My husband started working at home and my daughter, who was just starting first grade at the time, didn’t want to leave my side. She never knew who would care for her when she arrived home from school. She didn’t want to go to gymnastics or dance class anymore. We put carpeting and foam letters all over our floors so Brandon wouldn’t crack his skull when he fell.
Our previously happy, sweet little boy was now a droopy, angry, jittery mess. We resisted our previous neurologist’s recommendations to increase the meds and instead opted to try the Modified Atkins Diet (MAD). On November 16th, 2009, the day after Brandon’s 4th birthday – where he fell face forward into his piece of birthday cake – we started him on the Modified Atkins Diet. Our neurologist at the time encouraged us to try MAD because he believed that the Ketogenic Diet was not palatable and not necessary for Brandon. He also thought that a helmet wasn’t necessary despite the fact that Brandon was falling all day long!
We fumbled through the first few weeks of MAD with no guidance and no real idea of what we were doing. We continued to spend our nights researching cures and treatments for epilepsy and I joined the yahoo support group for Doose Syndrome. Through that group I “met” a woman who urged me to see Dr. Bergqvist and to think about trying the ketogenic diet. I really, really, really didn’t want to do keto. I liked the relative flexibility of MAD as opposed to the extreme strictness of keto. I was determined that MAD could be Brandon’s cure.
Well, our neurology team had a different idea and were very persuasive. In March 2010, I sat through a full-day of class to learn about the diet, and on April 15, 2010, we started the Ketogenic Diet at a 4:1 ratio. We are one of the very, very lucky ones. FOUR days later the drops, myoclonics and absence seizures VANISHED, like MAGIC! About 30 days later, on May 20th, Brandon did have 2 tonic/clonic seizures but those were due to a high fever and an ear infection. Eleven days following the ear infection Brandon had 4 tonic/clonic seizures, most likely due to excess Powerade 0, (I didn’t realize the importance of following the strict rules of Keto – I never made that mistake again!) and that was it! We haven’t seen any seizures since June 1, 2010.
Brandon finished weaning his meds on March 13, 2011, and he once again became our sweet, kind little boy! We continued on the Ketogenic Diet for another 2.5 years.
Brandon accepted his diet with little pushback, and it became a somewhat normal part of his life. He was able to ride a bike, go swimming, play with his friends, and go to school like other 6-year-old children. During the spring of 2012, we began to wean Brandon from the diet. We did this upon the advice of our neurologist and with the guidance of the nutritionist and keto nurse. We went very slowly down in ratio until September 2012 when Brandon ate his very first silver dollar pancake at IHOP! That was a wonderful day!
Update as of February 2023
Hi, I’m Brandon! I used to be on the Ketogenic Diet, but have been off of it for nearly ten years now! I’m currently in 11th grade and attend a school focused on building skills in the medias, such as TV/Radio production and art/design concepts. Outside of school, I love to act in plays and musicals! I recently got my license and I’m currently looking at colleges! I just published a children’s picture book, “Krazy for Keto,” describing my experience on the diet. I credit the Ketogenic Diet for saving his life and allowing his brain to repair itself.