Living with Childhood Epilepsy in Canada: A Memoir

posted in: TDEF Blog | 2

By: Riley Young

Riley Young enjoying his first sandwich after two and a half years of being on the keto diet. Photo provided by Riley Young.

Riley Young is a pre-med student living in Vancouver who battled childhood epilepsy. Riley is one of our interns who is helping to educate society about epilepsy. The Defeating Epilepsy Foundation thanks Riley for sharing his story and working to help those battling epilepsy.

Part 1 – The Beginning

My life changed dramatically when I was three years old. I was swimming with my grandfather when I suddenly became fixated on a young girl’s reflective bathing suit. My eyes were apparently “locked” as if I was staring into space. I lay limp in my grandfather’s arms, still locked in this stare, as he pulled me out of the water. Someone called 911. This was the beginning of my journey with epilepsy.

Over the next few months, I attended countless doctor’s appointments, to try and figure out what caused this initial event. Most signs ultimately pointed to some type of seizure as the root cause. What we didn’t know, however, was that this initial seizure acted as a catalyst for a pattern that started to develop. Every so often, I would blink, or my head might jerk ever so slightly. Most people didn’t even notice it. I learned much later that this was called an absence seizure. Early on, my parents would notice one or two absence seizures per day, thinking these minor episodes would have no impact on me.

It was during this “early” stage when I had my first contact with the Pediatric Neurology department at Children’s Hospital in Vancouver, Canada. The recommended course of action was to attempt to control these absence seizures with medication. For the most part, this exercise was simply trial and error. When starting a new medication, the dose would gradually increase until my parents noticed any reduction or change in the absence seizures. They were also expected to watch for other side effects.

Generally speaking, the various medications and combinations of several medications never seemed to eliminate the seizures. My parents continued to see various numbers of these small “blips” that I would have on a near-daily basis. What they learned later was that there was also something else going on that they did not see.

I was having a different type of seizure at night. These seizures, at least the ones my parents knew about, would almost always end with a wet bed. It was a fairly regular occurrence, but I almost always woke up very drowsy for the first part of the morning. My parents’ recount: “In hindsight, this should likely have been more of an indicator that something was wrong, but at the time, it seemed quite normal.”

This trial and error of medications, EEG (electroencephalogram) tests, blood tests, and even a skin biopsy continued for around three years. To my family and everyone around, everything seemed fine.

Part 2 – The Diet

I have decided to write this part from the perspective of my father as I feel like it better captures my experiences.

It wasn’t until Riley was seven years old that our lives really felt like they came to a stop.  Riley had caught the flu and was suffering the normal symptoms for several days. My wife Anne sensed something was not right. Even with me arguing that everything was fine, she convinced me to return early from a weekend at the family cabin so he could get checked out at Children’s Hospital. We had plans to go to Hawaii the following week, so it was prudent to have him checked before leaving. It is hard to specifically recall the details, but I do remember that it was apparent fairly quickly that Anne’s concerns were justified. The doctors decided to admit Riley to do further tests. His neurologist that we had met with countless times was either unavailable or had suggested that we meet with a more senior neurologist named Dr. Smith.

Believe it or not, given that we had believed his past seizures were not hurting him or impacting him in any way, even this hospital stay seemed like somewhat of a formality. I don’t recall being the least bit concerned, even when the neurology nurse asked us to have a meeting with her and Dr. Smith. However, the bomb truly dropped at our first meeting with them.

The neurology team concluded that the flu episode had triggered an almost constant state of repeated seizures. It was as if fireworks were going off inside his head as his brain struggled to function. He had some form of encephalopathic epilepsy, and the prognosis was not good.  Essentially, the seizures were not the big issue, but it was this “storm” (as Dr. Smith put it) in Riley’s brain that would gradually and methodically damage his brain. It was only a matter of time, but it had started. He would become severely mentally handicapped: likely unable to hold down a job, limited learning, and would require significant assistance to carry on with even a medial life.

I couldn’t believe my ears. The outlook was so unpromising; in fact, the picture could not have been painted any bleaker. Thoughts of my family and admittedly my own future raced through my mind. I could not stop it.

I immediately felt distaste for Dr. Smith and so did Anne. We felt blindsided. This perfect little boy, how could this be? 

This was March of 2005. Riley had just turned seven. Hawaii was canceled.

We returned from the hospital and Anne’s mom had come to stay. None of us could sleep.  Thoughts of Riley and the future continued to race through our minds. It truly was almost unbearable. You can only partly imagine.

One of us would sleep with Riley every night. We had to keep a record of any seizure that he had during the night. Sleep and tiredness increase the chance of seizures. These nights became hell.  For the first time, we saw what had been happening while Riley slept. His limbs would stiffen, his head would tilt back, all the while convulsions took over his body. His eyes were wide open.  Nobody was home.

I believe this routine lasted for about three months. During this time, we were trying a new medication and it appeared to have some effect. Riley was not having seizures during the day and night, and the larger seizures were less common.

We had several subsequent meetings with Dr. Smith and a larger team of neurologists and nurses. Dr. Smith was recommending (although with a seemingly heavy heart) that we aggressively treat Riley. What this meant was putting Riley on the Ketogenic Diet. The ketogenic diet is very restrictive, and all food intake is monitored throughout the minimum two-year commitment that is required. The exact mechanism for how the diet works is unknown, but it is a diet that involves consuming a high percentage (~80%) of one’s daily caloric intake through fats. The result is a very high fat, low protein, and essentially carbohydrate-free diet that causes the body to go into a state of ketosis. For success, ketosis must be maintained.

The thought of putting Riley on this restrictive diet weighed heavily on us, but we quite simply recognized that there was no alternative. We spent hours on the internet researching and even contacted a neurologist at Johns Hopkins Hospital in Maryland (recognized center for ketogenic diet treatment).

The plan was to start in July so that Riley would be out of school and we could take some time off work to learn more about the diet and get accustomed to preparing the meals.

The Hawaii trip that we had canceled in March was taken in May. Everything went fine until the third night before returning home. Riley had another big seizure in the night. These nighttime seizures took everything out of him. He would wake up in the morning very groggy and with barely any energy. It was tough just to get him out of bed. The rest of our trip was very difficult. For some reason, he took longer than normal to recover. I remember going to dinner and Riley could not even sit up in his chair. He lay slouched over the arm of the chair.  Not only was it heart wrenching to watch, but I also worried for the bleak future my son was heading towards.

July 1st came and we began the ketogenic diet. Anne had taken time off work to help during the initial stage of the diet and get accustomed to preparing the recipes. Every ingredient of every meal was measured and weighed. This ensured there was a precise balance between the number of carbohydrates, protein, and fat. Riley was on a strict routine of three meals and three snacks per day. Since the diet is essentially a form of medication, the timing of these meals and snacks also must be monitored.

It was not easy during the first few weeks of the diet as some of the recipes were not very palatable. This was a learning process for us and eventually, we figured out what recipes Riley “enjoyed” the most. One of the main staples of the diet is a high-fat cream. It is an efficient way to get high doses of fat, without carbs. This cream would become part of Riley’s meals and snacks for the next two and a half years.

Without getting into the specifics of the meals, the diet consisted of very few carbs. No bread, sugars, limited fruit, no pasta or anything that contained flour, no juices, and the list goes on. It basically eliminated or was extremely restrictive on the foods most seven-year-olds enjoy the most.

Times like Halloween and other holidays, birthday parties, certain school functions all had to be modified so that Riley could participate without the risk of him accidentally being given food.  At Halloween for example, we would still go out trick or treating but upon returning, we would buy the candy off Riley so he could then go buy a toy or something of interest. 

We found that Riley adapted extremely well to these new restrictions placed upon him. There was rarely a complaint. Especially considering his younger brother had no restrictions, he was constantly exposed to tempting treats.

Over the first year on the diet, we weaned Riley off all medications. Early indications were that the diet was working.  The EEG results were normal and both Anne and I noticed a difference in Riley’s behavior and schoolwork. Everything was going very well. I remember Dr. Smith telling us at one point that we “had hit a home run”.

Fortunately, nothing changed.  Riley continued to have normal EEG results and the diet proved to be a success. The summer of 2007 arrived which was the two-year anniversary of Riley’s diet. We knew the day would come when we had to make some decisions about coming off the diet, but both Anne and I had grown to love the diet because of the great results we witnessed in Riley. However, we agreed to a slow tapering off the diet, with the goal of being completely off by Christmas 2007.

The slow weaning off the diet was no different than weaning off a medication, very gradual and deliberate. Fortunately, it was uneventful and there was no change in Riley. During the weeks just before Christmas, we started to introduce carbs back into his diet. I will never forget when he was eating a banana for the first time and he exclaimed “Dad, you just don’t know how good it tastes when you know you get to eat the whole thing”. The next milestone was a sandwich, and he has not looked back since.

To us, the diet was a savior. The fact that Riley did so well adapting and sticking to the diet for two and a half years is truly inspiring. From where he was, to where he is today, solely due to a change in diet, is incredible. Truly a miracle.

2 Responses

  1. Mary Pearce

    Thank you for sharing your remarkable story Riley! You are one resilient young man who will continue to amaze all of us every step of the way 😊
    Mary

  2. Marlies Venier

    Food is medicine. Well done Reilly what strength and commitment you had to getting well. Thank you for sharing your story. Your parents are wonderful. Grateful you have chosen to be a Dr. You will serve and heal so many.

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