It was just a mere idea months ago. This idea that I would completely change my son's diet in hopes that it would help with seizure control.
It was a few months ago when I brought the idea of the Ketogenic diet up to some of our doctors. They seemed supportive at first but then when they found out I was serious, their tune changed and I was quickly discouraged from starting such a diet. Why? Because it would soon become apparent they had little experience with it and said things like "hard" and "difficult" when explaining it. Well, some of this crap is hard and difficult so nothing new there!
I was determined. I know the stories of great, miraculous success. And I know the stories of the diet failing to do much of anything. My intent was and is to find the very best seizure control I can, and the fact that the Ketogenic diet is diet centered and not medication centered is particularly appealing. I also either want this to be "it," the thing that wipes out those brain interruptions so Christian can move forward, or I want to be able to cross this off my list if it isn't "it."
And here we are.
It was my understanding we would have to have two appointments. Our first would be an evaluation with a neurologist at Phoenix Children's Hospital. Then we would make an appointment with a dietitian who would basically take over and help administer Christian's new diet. That means we would have had to make another 2 hour trip back to PCH at another date, prolonging the beginning of the diet.
We arrived at 8:30 in the morning and met with a new neurologist, actually an epileptologist, who sounded exactly like Isabella Rosellini and kind of looked like her, too. She evaluated Christian and quickly made the determination that he would be a fine candidate for the diet. She also looked through his records and mentioned that our neurologist in Tucson is doing everything she would have done. Good to know.
Because she made the determination so quickly, she called the dietitian and asked if she could see us today. She could! But in three hours! So Dr. Rosellini told us to go shopping and come back after lunch.
We returned after lunch and that's where information overload started. The Ketogenic diet is about ratios of fats and proteins to carbs. High fats and proteins, low carbs. There are calorie calculations and weighing by the tenth of a gram. There are recipes for tasting and OT. We even have to make sure our Tylenol and other over the counter medications are sugar free. Not only that, we have to make sure our lotions, soaps, and toothpastes don't have any of the forbidden ingredients.
It's not just a diet, it's a complete overhaul in the way we do some things.
The prescriptions for new formula specifically formulated for the diet will be done by Thursday or Friday. We will begin the diet in the comfort of our own home and check his urine for ketones twice daily to make sure he is in ketosis.
I'm hoping we'll be ready to start by the beginning of next week and I have the direct line to the dietitian.
Here we go!
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