Wednesday, November 3, 2010

whooooaah Ketosis! :D

Well the Meeting of the minds has come and gone. It was long one. My head was spinning and anxiety was running high in the teeeny tiney room that was filled by the small table I was freakin out. I hate Anxiety. Its really crippling. Well Madie began to cry half way thru so I took her to the waiting room and we sat in the chairs. almost falling asleep..
Hubster got alot of the info and all I really wanted to know was how to make up the bottles..how many carbs per day she can have and how to incorporate that into the mix...and of course the list of foods.
Every other day we will add more and more bottles of Ketocal to the mix. 5 10oz ones if she JUST eats Ketocal. We hope to get some food in there too...maybe cut one or two bottles out...use milk or juices instead..dont quite know yet. SO it wont be entirely Ketocal but we will start that way..
For the first time ever I am going to have to have a "meal schedule" and I have no idea how that is going to be pulled off.. Hmm
I sat in the waiting room with a sleeping Madie for awhile and wheeled her around the circular hospital floor..watched all the seizure kids come and go...EEG's and such.
We are going to give the diet 2 months and then well...if things are good we continue for a bit...if no change and we still see "Episodes" well then we can the idea. and we stay on the Depakote Sprinkles.
Lots of things to crush, Lots of things to mix, I am YES overwhelmed by the whole thing. Was in and out of panic the whole meeting. nodding as I understood things and asking no questions...chugging my water bottle and telling myself to keep my shit together but all I could think about was getting out of that small room..
I cannot fathom a life without Seizures...to see my Madie be seizure free?? Whhoah there buddy dont jump on your high horse yet! One day at a time. See how it goes. Slowly intro-ing the new stuff as we get rid of the Pediasure. I just get nervous since she has always had poopy (blockage) issues I do not want big diaper explosions..ack. lol
My hopes for this thing?? Well as nice as no seizures would be I keep that idea at bay(in my secret wish basket) but even if we say saw like 1 a month or 1 every couple months..and no more annoying jerks and twitches..knocking my big girl sitter over :( boo! Did I mention the nice little nugget on her forehead? poor boo boo!
SO in a nutshell I hope it helps. I hope I can pull it off. I hope that it doesnt give her digestive issues. I hope we can go down on meds a little...alot of hopes. After 8 medications I try to still have hope! dangit!

3 comments:

ANewKindOfPerfect said...

I hope the transition goes smoothly! These little ones have such sensitive GI systems. We are going to try a new formula for Emily soon called Vivonex, and I am nervous as you are. Ugh.

As a side note, you said she should get 5 - 10oz bottles of Ketocal if she eats no food. 50 ounces a day? Wow! Does she drink that much now? That seems like SO much.

MrsFought said...

We've been on the diet for almost three months. Matthew's cognitive ability has grown leaps and bounds! It really is an amazing diet, we just haven't found seizure freedom yet. Good luck to you and Maddie. She is just too cute!!!

Sinead said...

Hoping for success.