We left the Mayo Clinic with our new drug in hand and high hopes. Since the beginning of our journey with epilepsy, we knew through the countless hours we’d spent scouring the internet that Sabril had worked for many children with Infantile Spasms when ACTH had failed. Why wouldn’t it work for Owen too? Unfortunately, Owen was not to be one of the children for which it worked. Ah, another drug failure. Good times.
Sometimes, rather than controlling seizures, an anti-epileptic drug (AED) can do the opposite and actually activate seizures. This was Owen’s reaction to Sabril. After beginning Sabril, we noticed an increase in Owen’s seizure activity – a dramatic increase. By the time we reached the so called therapeutic dose of Sabril, Owen was seizing more often than not. And, if he wasn’t seizing, he was sleeping. I remember going out for Easter brunch that year with Owen in tow. By this time, Owen would have been 8 months old. As most of you with typically developing children know, taking a child out to a restaurant at that age can be a daunting task. Fortunately, or unfortunately, however you want to look at it, we had a peaceful outing. Our 8 month old baby slept through the entire meal, looking adorable in his “Baby’s First Easter” outfit.
After it became apparent Sabril was not working for Owen, it was time to look at other options. Our neurologist recommended we try the Ketogenic Diet rather than trying another AED. Why not? What did we have to lose?
Lately, the Ketogenic Diet, or Keto Diet as the cool kids are calling it, is all the rage for weight loss in normal, healthy human beings. However, back when we first heard of it in the spring of 2010, it was completely foreign to us. For those of you not familiar with the Ketogenic Diet, it is a high fat, low carbohydrate diet that has been proven to help control seizures in some people with epilepsy. The goal for someone on the Ketogenic Diet is to achieve ketosis. Ketosis happens when the body runs out of carbohydrates to burn and burns fat instead.
So, it was off to the Mayo Clinic again to get started on the Ketogenic Diet. The purpose of the hospitalization was twofold; one, to get Owen’s body ready and acclimated to the diet, and two, to educate us about the process. Because this was to be a shorter stay, we both decided to stay in the hospital room with Owen. Needless to say, this made for some very cramped quarters.
Now, about the diet. Because Owen was still an infant, the diet was going to be relatively easy for us in that most of his calories would come from a formula called Ketocal. The rest of his calories he would get via “snacks” he would get 3 times a day. I firmly believe my son’s aversion to food stems from his Ketogenic Diet snacks. For example, snacks consisted of one of the following: butter, mayonnaise or heavy whipping cream. You read that right. That meant literally feeding him a glop of one of those three. The snack would also consist of some type of baby food, which looked incredibly unappetizing – can’t imagine it tasted any better. There was a third component, which I believe was a little bit of baby food fruit.
As indicated in the title, we accidentally threw out Owen’s first Keto snack. We ordered dinner for ourselves through the hospital food service. The meal came with these curious little condiment cups which we thought nothing of. I’m not that fond of condiments for the most part, so I didn’t even check them out. A short while later, we called the nurse and told her we never received Owen’s meal. We were told it had come with our dinners. So the contents of those little condiment cups were for him. People, a little heads up would have been nice.
The amount of formula and food Owen could have needed to be precise – very, very precise. He could have no more, or no less. The components of each of his snacks needed to be weighed on a gram scale. When going to sites to order one online, we got the impression we were not their target market, if you know what I mean. We were also told to use a spatula to scrape the remaining food from the plate so that he got every last morsel. Yes, we needed to be that precise. As you can imagine, this caused a lot of stress. He had to eat the food whether he liked it or not, and, if he was hungry for more, he couldn’t just have more. There was a lot of back and forth with a dietitian in the beginning to make sure Owen was getting enough to eat while also achieving ketosis.
How would we know if Owen was in ketosis? That required checking his urine against a test strip. So, with each diaper change we needed to put a cotton ball in his diaper to catch urine we could use for the test. Squeeze the urine drenched cotton ball on the test strip, and voila, you get your results.
Despite our best efforts, achieving ketosis proved elusive. We were in weekly contact with Owen’s dietitian at Mayo to tweak his diet in an effort to achieve consistent ketosis and to address his weight issues ( he lost a pound shortly after starting the diet). At the height of our Ketogenic diet journey, I decided that we might have a better chance at consistent ketosis if we did a better job of spreading his Ketocal intake out more evenly throughout the day. As part of this effort, I got up every night at midnight and 3:00 to give him some of his daily intake of Ketocal. I was so locked in to this schedule that while on a business trip in a different time zone, I woke up precisely when it was time to give him his bottle. Looking back now, I’m not sure how I did this and still was able to function as a normal human being during the day. Maybe I wasn’t functioning normally and no one had the heart to tell me.
All these efforts would have been worth it had it worked. Unfortunately, it didn’t. While we were no worse off, we were no better off either. Owen continued to seize. By this time, Owen could have clusters of Infantile Spasms that would last 30 minutes or longer. They generally happened in the middle of the night and were preceded by a blood curdling scream. It was time to explore other options again, the next to be much more drastic.
I Don't Have Time for This Sh*#! 