My Story
Hello, I'm Brandon Kopp! When I was three years old, I had my first seizure, the first of the thousands that I would face every day soon after that day. After trying a wide variety of medications and diets, my mom finally made the decision to go try the Ketogenic Diet, despite the fact that it seemed impossibly challenging. After only a few days, my seizures completely stopped and would never return. I was on the Keto diet for the next three years, and after getting off I was able to return to a "normal" life.
When I started Keto, there was very little known about it and very few resources available. Fortunately, as the diet becomes more popular, the community has grown substantially. However, starting the Ketogenic with your child is still a scary and arduous process, and I started
Hello, I'm Brandon Kopp! When I was three years old, I had my first seizure, the first of the thousands that I would face every day soon after that day. After trying a wide variety of medications and diets, my mom finally made the decision to go try the Ketogenic Diet, despite the fact that it seemed impossibly challenging. After only a few days, my seizures completely stopped and would never return. I was on the Keto diet for the next three years, and after getting off I was able to return to a "normal" life.
When I started Keto, there was very little known about it and very few resources available. Fortunately, as the diet becomes more popular, the community has grown substantially. However, starting the Ketogenic with your child is still a scary and arduous process, and I started
Krazy For Keto to help make this arduous process easier and less stressful for new families. In 2018, I began visiting the Children's Hospital of Philadelphia monthly. At CHOP, new Keto families stay at the hospital for one week as they are taught about the diet and their child's status is monitored heavily. On the first or second night of this week, I would visit these families. I would explain my story and answer any questions they might have. I would also give them a gift bag that contained some Keto essentials such as cooking supplies and measuring cups.
Unfortunately, COVID put a stop to these monthly visits. However, in October 2021 I began to get Krazy For Keto back up to speed. I am now hosting virtual meetings for new families considering or just starting the Keto diet across the world. When it is allowed, I will resume my visits to CHOP and continue to make Keto gift bags to give out.
My Mom’s Story
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, Dr. Bergqvist, Claire and Cagla had a different idea and were very persuasive. In March 2010, I sat through this class 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.
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Brandon accepted his diet 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 Dr. Bergqvist and with the guidance of Claire and Cagla. 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!
Now, almost ten years later, Brandon remains seizure-free and med free. He is a senior in high school and looks forward to attending Northwestern University next fall! He has been in honors classes and gifted & talented programs throughout elementary school and middle school. I credit the Ketogenic Diet for saving his life and allowing his brain to repair itself.
Please try the diet. It really is doable. I know that it seems overwhelming and impossible but it is not. Yes, it is very, very difficult at first. I used to spend hours and hours in the kitchen trying to please my little boy.