Saturday, May 12, 2012

Ketogenic Diet Update

Sorry I haven't updated sooner, I have been busy!  We were able to go home on Wednesday, which was day 3, as planned.  Levi's blood sugar remained stable the entire time, his ketones were steady, and all was good.  I've been busy making formula and meal recipes, which are very simple since he's still so little.  Thursday night he was running a fever of 101.1 and just as I was about to feed him he threw up.  I didn't know if he had caught a virus, if the many seizures were causing the fever, if he just gagged on the medicine/water combo, or what was going on.  I stayed up with him most of the night to be sure he was alright.  The next morning he was bright eyed and chipper and has not had any issues since.

When we left the hospital his daily meal plan consisted of four meals: a 5 ounce ketocal bottle twice a day, scrambled eggs/applesauce/heavy cream for breakfast, and Gerber turkey/canned green beans/heavy cream for dinner.  He has let us know in no uncertain terms that he does not like scrambled eggs, so we replaced it with Gerber beef, and he didn't like the texture of canned green beans, so he now has Gerber green beans.  I think that will work out better.

I have to say the actual diet is very much easier than I had anticipated.  I just weigh out everything and feed him.  The extremely difficult part is getting him to eat it.  Most kiddos are hungry and want to eat.  Not Levi.  He is better since we've decreased Topamax so much (4 pills a day down from 12!) but he's just not as hungry as I would like him to be.  When he wants to eat he does a great job, but when he doesn't want to it's all I can do to get the food down him.  Talk about stressful!  BUT we are only on day 6 and we've already seen a huge difference in many areas: he's so much more alert, his eyes are wide open and bright, he doesn't have much of the rapid eye movement anymore, he's more active, kicking his legs and moving his arms.  Whatever we have to go through is worth it to see the positive changes we've seen so far.  The seizures are lessening as well, in duration as well as in number.

So please keep Levi in your prayers!  Things are going very well, but he still has a ways to go to reach seizure freedom.

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