Wednesday, July 14, 2010


For the past year (maybe longer) Soren has been having a really hard time with seizures. Currently he has anywhere from 2 tonic seizures to a cluster of 26 seizures a day. Sometimes even a combo of both.

We've been playing with meds. We never wanted Soren on more than 3 meds. Currently he's on 4. I'm weaning him off one so he'll be back at three. Ideally, he'd only be on 2. Well, ideally he'd be on none.

Which leads me to the Ketogenic Diet. The Keto Diet--where you put the body into a state of ketosis as in the Atkins diet--works really well for certain kids with seizures. We almost did it about back in 2005, but then we started Lamictal and Soren had a really good, almost seizure-free year. It was amazing!

So we put off the diet. For 5 years. And we've avoided it because all we've heard from parents is what a HUGE challenge it is. You have to weigh EVERYTHING. You have to get every bit of food into your child. I just wasn't up for it.

But after this year, with the encouragement of our new doctor, we've decided to give it a try. I mean, weighing food may be a pain, but watching Soren seize like this daily is far worse. Plus, since Soren only eats what we give him, the only "hard" part will be the food prep.

So now I'm trying out high-fat, low-carb foods on him. Giving him heaving whipping cream to drink. Adding sour cream to his avocado. Mixing ground bacon into his eggs cooked in butter.

After we figure out foods he likes, I'll learn to weigh them properly. And after I master that, Soren gets checked into the hospital for a 3-day detox off carbs.

If this works, his seizures will decrease! If it really works, he'll be seizure-free. If it works for a while, we will hopefully be able to decrease his meds. Some kids are just on the diet, seizure-free, and completely med-free. That would be amazing! Soren has been on AEDs since he was 6 months old!

But for now, I'm playing with the foods and asking, "Would you like some extra fat with that fat?" and answering, "Why, yes, I would!"