Sunday, November 27, 2011

Reality of this diet

Ben only had one seizure during the night last night and he didn't have one upon waking this morning.  :)  :)He's napping right now so I'm hoping that he will make it through nap time without one as well.

We've been doing this diet at home for about 9 days now.  Here are some of the realities of this diet:
  • He consumes a lot of oil, butter, and cream.  In the past 9 days, I have gone through one half of a bottle of canola oil, one half of a bottle of olive oil, 2 1/2 quarts of heavy whipping cream, and about 3 sticks of butter - all for Ben.
  • There are hidden carbohydrates EVERYWHERE.  We have had to change his toothpaste.  He can't chew sugar free gum because it has a teeny tiny bit of carbs.  I have to grate my own parmesan cheese because the grated stuff has more carbs in it.  He hasn't even eaten a piece of fruit in days.
  • He is allowed one free food a day from this list: 
    • 25 grams of lettuce (that's a lot)
    • 1 macademia nut
    • 1 walnut
    • 3 black olives
    • or 1 pecan
  • He's allowed 2 optional snacks of 50 calories per day, but they still have to maintain the 4:1 ratio.  I wanted to incorporate fruit since he's not getting any with his meals, so here is a picture of a sample snack.  For a fruit snack he gets 1/2 of a grape and about 1/2 ounce of cream.  There are a few snacks listed in the cookbook that I will have to experiment with.  This is just an example of what the hospital sent me home with.
  • It is not nutritionally whole.  He now takes 2 drops of Vitamin D, a Centrum complete vitamin, a Calcium supplement, and a prescription of Phosphorous each day.  He has to have the adult version of these vitamins because the kid versions are loaded with carbs.  It's a good thing he can swallow pills!
  • We are officially in the fine tuning phase.  We need to figure out why it's not working so well right now.  It may be that he has too many calories.  The body needs to think it's starving and can't hold anything in reserves.  It could be that his ratio is too high.  He may need to go back on the drug Topamax and we'd have to wean later.  He may be drinking too much fluid or not enough.  I'm hoping that tomorrow we will begin to get some direction on what the problem may be.
  • It is a miracle for so many kids.  I found this video on youtube of Charlie speaking before numerous neurologists, epileptologists, dietitians, and the like.  Charlie is the reason for The Charlie Foundation.  His story is also told in a movie called, First Do No Harm.  I haven't seen it, but according to the literature I've read, the movie depicts the diet working much faster for him than it did in reality.  But the end result is that it worked.  Here is he talking a few years ago:  (sorry my computer isn't cooperating today, you'll have to push control while clicking on the link.)
My favorite words are these, "My name is Charlie and I used to have epilepsy..."  His journey is so different from Ben's, but I pray that the end result will be the same.

1 comment:

  1. I enjoyed Charlie's speech and look forward to the day when Benny will talk about when he used to have Doose.

    We'll keep praying!!

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