Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Keto, T-Minus 20 days

Posted by Nicole on April 29, 2014 at 10:45 PM

1. Yes, I finished the book I was writing.


2. No, it’s not published, and it never will be. It turns out I had no idea how much worse things could get, and the book I thought was rich in emotion and drama looks like child’s play now.


3. Yes, of course we’ve tried marijuana for Aiden. No, it didn’t work for him.


I wanted to update our friends on a big step Aiden’s taking in a few weeks, and a quick Facebook post didn’t seem to do it justice. I won’t blog every week like before, but maybe an update here and there wouldn’t hurt.


In a couple of weeks, Aiden will start the ketogenic diet. It’s a diet high in fat, low in protein, and almost carb free. He'll be admitted to Children's Hospital for a week to start it, missing the last week of school. Every bite of food he eats will be carefully prepared, measured to the gram, and given in a specific ratio. He will be miserable for a while. But it’s the right decision at this point. 


This is not going to be easy on any of us, but it will be hardest on him. He will be sick at first, and he won't understand why we're doing this to him. I just hope it helps him like it's helped so many other kids, and I hope it's worth it. His little brain needs a break, and if this can give it to him then it'll be worth all of the effort!  Wish him luck.

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