When Alena was diagnosed with Intractable Epilepsy, she was on four medications. Trileptal, Keppra, Onfi, and Depakote. She was drugged - VERY drugged. She practically slept through the first half of fist grade.
Our only option at this point was to try out a special medical diet. Alena's doctor, Dr. Popli, sent us to see a nutritionist at the hospital who explained the diet and what it would entail. We knew it wouldn't be easy. We had already looked into the Ketogenic Diet for Epilepsy - and knew that it had worked for many children. We started Alena on the Modified Atkins Diet (or, as I call it, he Modified Ketogenic Diet...a slightly less rigid form of the Ketogenic Diet for Epilepsy) right after Thanksgiving of 2012.
The nutritionist sent us home with a few recipes and meal plans for Alena. The most important part of this diet, and the hardest, was to limit Alena's carbohydrate intake to 20 GRAMS a day - and to replace those calories with FAT. Just FYI, that's not a lot of carbs. Here's an example - there are 27 carbs in ONE banana. And we had to keep her intake to 20 grams, A DAY. Did I mention that this child usually ate pasta with butter for almost every meal?
The idea behind this diet is that it sends the body into ketosis - which basically means your body is burning fat instead of glucose. When in ketosis, the brain uses ketones instead of glucose for energy. This changes the metabolism of the brain and for some reason (no one knows why) this can help control seizures.
Anyway, we started feeding Alena her new food. This was her first dinner on the new diet
Raw Broccoli - 1/4 Cup
Raw Cauliflower - 1/4 Cup
Chicken Nuggets (egg white, coconut flour, Earth Balance Spread, shredded chicken, baking powder, and olive oile)
1/2 T Mayonaise mixed with 1 T Ranch dressing
Then for dessert she had 3 raspberries smothered in heavy cream.
She hated it. But she ate it. And then about an hour later she puked it all up. It was just too much fat for her system. Let me tell you - puke that involves heavy cream is quite terrifying...
This happened at almost every meal. She hated it. We hated it. But we persevered.
I remember one particular incident very clearly. It was my husbands birthday. We had only been on the diet for about 2 weeks. I wanted to make something special that everyone could enjoy - but most birthday treats contain a boat load of carbs. I wracked my brain and finally came up with an idea - ICE CREAM! I made some special ice cream that had a tiny amount carbs and a ton of fat (thank you heavy cream and Splenda!). It took me a VERY long time to create something that was palatable. I was so excited to have her try it. She refused. For 30 minutes. Then tried it. And hated it. I got so mad. So FRUSTRATED. I threw the ice cream across the kitchen and went upstairs and cried.
This is how it was. For a long time. But we eventually got into the swing of things. But then the seizures returned. We adjusted the diet and started calculating her meals to a strict fat to carb/protein ratio of 2.5:1 and no less than 400 calories and no more than 500. I make this sound like no big deal, but it took about a year of tinkering to figure out. We had to switch her medication from liquid form to pill form - the liquid meds had carbs in them. She had to swallow 28 pills a day. She was 6 years old. When she puked up her meals, my husband and I would have to sift through it to find the pills so that we could make sure she got all of her medications.
This was very hard. VERY VERY hard. Everything that went into Alena's mouth had to be calculated and measured to the tenth of a gram. Here is what one of her typical dinners looked like when she was on the 2.5:1 ratio
45 grams 40% heavy cream mixed with some sugar free Torani Syrup
15 grams raw peppers
30 grams sardines in oil
4 grams olive oil
15 grams macadamia nuts
Here typical lunch was 45 grams heavy cream and a muffin which contained macadamia nut butter, Truvia, egg, butter, almond flour, blueberries, and oil - all measured to the tenth of a gram). These muffins took forever to make. Macadamia nut butter is not a commercial item. At at this point I was using a mortar and pestle to crush up the nuts. I tried a blender. It didn't work. I tried a magic bullet. It didn't work. Nothing worked as well as that stupid mortar and pestle. (until my husband got me a Vitimix a year later. Changed my life!).
But the diet worked. She was able to slowly come off of three of her four medications. It was life changing. I had my daughter back.
I spent A LOT of time cooking. I made up recipes. I would come home from rehearsals at 10pm and make her food. I would get up at 6am and make her food. It consumed my entire life. I worked hard to make every holiday, every birthday, every special school event work with her diet. I honestly don't know how I did it. My husband tried to help, but he was busy with work and dealing with her illness in his own way. The hardest part for me was when she would get sick of something that I could make in batches and serve on a daily basis (like the muffins). When this happened, I had to start back at square one.
There have been many fights, many tears, and many scary moments. If you want to see some recipes and meals etc. you can go here....
But the diet worked.
In the spring of 2015 through a routine blood-test (which all keto kids get every six months) we discovered that Alena's cholesterol was alarmingly high. This wasn't all this surprising - she had been on the diet for over two years - and the majority of her calories came from heavy cream and butter. We were instructed to change the diet. No more strict ratio. No more limiting protein. Now we were to give her as much protein as she wanted, decrease the heavy fat dairy - and instead used nuts like almonds, sunflower seeds, and pistacios for the calories-, keep the calories between 400 and 500 calories, and keep the daily carbs at 20g. It seemed like a bit more freedom. But I was terrified about the change. What if her seizures got worse?
I had to reinvent recipes again. It was hard, but by this point my husband had begun to take over some of the cooking. Actually he took over almost all of the cooking. These days I find or make up recipes and try them out. If they work and Alena likes them, my husband cooks them on a regular basis. I was and still am incredibly burned-out on cooking Alena's regular foods.
This is where we are at now. We are surviving. Luckily the changes in Alena's diet did not cause an increase in seizures. The diet is still working. We are hoping her next blood test will show improvement.