2011 - New Year

Has it really been more than two months since my last confession...I mean, post? And what a terrible post to leave off at! I think I did kind of hit a wall around then. Part grief, part fear, resentment, exhaustion, and frustration! It's been a tearful couple of months as I actually experience all the emotions I had been keeping at bay. I'm feeling pretty good today, though.

We started the ketogenic diet on December 30th under the advice of Jen Avis, who works with Tim at the diabetic clinic. Shockingly, not a single dietitian in Tucson has been found to have experience with the diet. Why, you ask? Because doctors don't prescribe it. Jack's ped. neuro. worked with someone from Boston Children's hospital and thinks the diet is great for parents who can do it. She's been in town only 2 years and I think she's as surprised as I am. But it was on the agenda at a conference she attended in Cleveland this year, and was widely supported. Anyway, for Jack it shouldn't be as difficult as I originally thought. Jen convinced me that we may as well stay on the formula for the whole year if it works. There is no way to manage the fat:protein:carb ratio with food as well as it is done with the formula. He will have his whole life to enjoy food when he outgrows IS. So, every night I mix 110g formula with 550mls hot water and divide it by four bottles. That's about 5 oz per bottle. 752 calories per day. We can add more water, if he seems to need it. That amount is calculated to give him slow growth, so periodically we'll go up on the calories. He has adjusted to the taste well.

For his other meds, we are weaning the Sabril and Phenobarbital slowly. He is on a good dose of Keppra still. All of the above need to be carb-free. That meant switching to a tablet of Keppra, brand-name only, please. Let me put a question out there for anyone to comment on. We are having a lot of trouble getting Jack to take meds lately. The Keppra is very bitter, and he notices it even crushed into 5oz of formula. The Sabril is in water, how do we get these two down him? It's a real struggle BID! That's nurse-speak for twice a day;)

At night when Jack's phenobarbital levels are lowest, he has such a wild time! It's fun until about 10:00pm., when it isn't. But last night, he LAUGHED! I mean, lots of real laughs. I was blowing raspberries on his neck and I guess I just found his tickle spot. And let me tell you, if you didn't know, the sound of Jack laughing is like crack to me. I can't get enough! He was jumping all over the place and having a grand old time. I hope this means the diet is working.