Wednesday, June 9, 2010
Headed out with Madies grandma to Hartford this morning to meet with the Dietitian about putting Madie on the DIET!
Madie ended up falling asleep in her stroller and snored most of the time we were there which was nice so we could all talk.
With Madie still on bottles it really made things quite easy with the KetoCal mix and a couple meals of food each day. I felt pretty confident that I could do it.
Those of you unfamiliar with this Diet well its a diet that is FATS and lots of them. NO sugar/carbs has the body make more ketones which are seizure "helpers" we would have to test her pee here and there with those fun little sticks (brings me back to the ACTH days when we tested her for glucose in her urine..) to test her ketones.
My mother in law was sold on it. madie will try the diet for a month and we will see where we are at with seizures..the goal really is OFF meds and FREE of seizures...now would that happen...well maybe I should get a little more realistic in our goals..
I am relived that we are not going to just take her off her meds untill we know the diet works I was getting nervous that they would do that..but no.
I am also relieved that we do not need to do the whole day of fasting at the hospital we wil l just wein her off her Pediasure one bottle at a time till we have her going on just the Keto-Cal and small keto meals.
The Keto Cal out of pocket can cost 35 bucks a can!! Ok so before we all go OH NO jamie! You have to PAY for that???
NO we do not. or at least that is the goal to have this all paid for! even a multi-vitamin for madie too! which will be a scooby-doo sugar free multi..:) We will also change form of the Depakine to the tabs or sprinkles so that too can be sugar free. I am pretty used to having a mini science lab each time I feed madie so its not new to me...
We will find small things like Tylenol and Laxatives and gas meds...all the usual things I may use here and there for madie in sugar free forms..:) Kinda cool.
It was awesome to go in there and know what I was talking about too! After reading My book on the keto Diet...(thanks sooooo much Cami's mom) I was chock full of knowledge and asking great questions. This Particular keto diet for madie will be a modified form with more food choices and no scales to weigh things but there will be alot of measuring cups.(I may be able to find some ones with alot of extra measurements at one of those chef stores...hmm ill have to see if mine are good enough.
SO on June 30th we go back to meet with Beth the Dietitians and Nurse Deb from Nuero and get the stuff we need to get the ball rollin.
At least I can say its another thing we have tried in the gruesome battle with seizures. Not really much else to report I guess.
last day of school for madie is FRI for her 3 week summer break and then the beginning of summer school :)
OMG my baby girl is 41 inches long!! and allllmost 30 pounds!! ha! 90th percentile in her height and 5 percentile in her weight! oh kiddo..I can only laugh.
Posted by Jamie at 3:50 PM