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Did you know that your body is an absolute miracle? The way any single one of us can function at all, regardless of how well our body seems to be doing, is nothing short of awe-inspiring. The fact that we can move and breathe and adapt and work and play is simply …. amazing.

For the past two years, we’ve been working through a diagnosis of epilepsy (absence seizures). We’ve tried various interventions, each with different levels and seasons of success. I don’t think one has been necessarily “more successful” than the rest; it seems rather like the strategies have worked together for better health.

Recently we added dietary considerations to our game plan. I am not cool enough to be trendy :), and am even  more leery of  dietary trends, but after speaking with a person at the Manitoba Epilepsy Foundation, I was starting to suspect that there is a least some dietary component to managing this condition.

When I started researching this, I discovered three main dietary paths that people can take, depending on their circumstance and particular goals.

  1. The initial diet was the Ketogenic Diet. It is very, very strict. It definitely should be followed by a pediatrician, and also a knowledgeable, preferably pediatric, dietician, because of the side effects involved. The goal is to burn fat instead of sugar for body fuel, and to do that you need to severely limit the number of carbs you are eating. This has many side effects, like possible kidney stones and an imbalance of ketones.
  2. Modified Atkins Diet for Kids is not as strict and has fewer side effects. However, it still involves a lot of carb counting and figuring and should be monitored by a professional as well.
  3. Low Glycemic Index Diet is the least rigid of the dietary options, and was our starting point. The goal is to choose foods off of the LGI list, to intentionally blend carbs with protein and healthy fats, and to choose higher protein snack and meal options when possible. This is a great place to begin because it causes you to review your food habits, start making different choices, and a more gradual start is easier on the body.

What I did not want was for food to become an enemy; to create an atmosphere in our home where we’re afraid of what we’re putting into our mouths or focusing a lot on fat and sugar and calories and carbs. When our girls started reading labels (and at the beginning you do have to read a LOT of labels!!), I tried to encourage them to look at the overall picture of food – to explore what kinds of effects food has on our bodies and to make choices accordingly.

For many who have allergies or dietary considerations, this challenge is a part of daily life. Reading labels, checking nutritional content, perhaps shopping differently – it is a lot of work at the beginning. Trying to encourage someone to eat different than they would like to, particularly a child, is also a lot of work :).

But is the work worth itHas the diet been successful?

Drum roll please :)……

Yes…. and not totally. Yes, in the sense that as we’ve paid attention to maintaining as level a blood sugar as possible, I’ve seen a remarkable stability in seizure activity. In our case, these absence seizures are very, very short, but can become quite frequent. As we implemented the LGI Treatment, I saw a big improvement. It was very encouraging :). As we’ve worked towards a lower daily carb count (Modified Atkins Diet), I have not seen as much of a change. The hope was that the LGI Treatment would bring stability, and the MAD would stop them completely. So far, unless there is a dramatic change, the MAD diet will not control the condition entirely.

I should add that we have started this food plan under the guidance of a nutritional specialist who worked for many years at the Children’s Hospital in pediatric dietary care. She is very knowledgeable, and also knows how far to go on the diet (limiting carb intake) before contacting a pediatrician to follow blood and urine tests. These appointments can get pricey, and thankfully we have an insurance plan that does cover the majority of the cost.

It is also important to note that in order to evaluate the success of any strategy, proper tracking is essential. I’ve set up a system that seems to work well for us to follow how many, and what times of day (thinking of chunks of time, ie. breakfast, morning, early afternoon, late afternoon, etc) seizures are taking place. This helps to examine possible triggers. It also helps us to determine whether there is any progress over time (ie. does the strategy help us during the cold season, when seizures tend to be more frequent)? I’ve also set up a simple excel document that helps me to see Kezia’s carb count for the day – and what needs to be changed or added.

There are a lot of adaptations. I did a lot of our cooking, and even more so now. If at all possible, I try to make her modified “treats” look exactly like ours. I’ve tried baking with stevia, with limited success, and have starting using xyletol as a sweetener – it is worth the {much extra} cost :). If you need to determine the carb count in a recipe, I’ve found this calculator to be very helpful. And with a free account, you can store modified recipes so that the nutritional content is always easily accessible. This program also has an extensive database of store-bought items — like things that are great to have along in the back pack. So many times the kids will be offered a treat – and now I have suitable options for Kezia as well so that she will not feel left out. Check out the weight loss or diabetes sections of your grocery store for some good options.

Be aware that “sugar-free” does not mean that you bake with honey instead!! Many, many pinterest recipes that claim to be “sugar-free” or “low in carbs” are really not. Reducing sugar intake is never a bad idea in any case, but if you are really watching your carbs, many recipes still include them in various ways.

If you are considering using these diets as a way of managing epilepsy, here are a few helpful resources:

  1. Charlie Foundation
  2. Epilepsy Foundation – dietary strategies
  3. About Kids Health – dietary strategies

Of course, there are differing degrees of wellness; different levels of functionality that we are content with or struggle with. Sometimes, the simplest strategies help ease the issue, other times relief is more complex. In some cases, we may not achieve the well-being that we would prefer. Some of the dietary tactics, combined with what we were already doing, have worked quite well. And we’ve learned a lot about the health and well-being of our bodies in the process!

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