Ketogenic Diet

Our nutritionist, Karla Mracek wasn't expecting to start Aliyah on the Ketogenic Diet so soon... she had set up an appointment 3 weeks from our day of admittance to the hospital.... She came into our room and asked us to start the Modified Atkinson Diet instead and come back in 3 weeks as schedule.. because she was busy starting the Keto Diet with 3 other patients during our stay....

Of course I was furious............ I know for a fact that when I first spoke with her 3 weeks prior to Aliyah's admittance I told her we were ready to start the Diet since ACTH wasn't looking promising... But she didn't count that as declaring anything because Aliyah was still weaning off of ACTH!!!

I did not want the Modified Atkins Diet.... I did not want me daughter to have 40 seizures a day for the next 3 weeks..... I could not believe she asked me to wait... I could not believe it!!! Yes everyone I did "B####" at her... Believe me I did not mean to!!!! I was just very frustrated!!!! I needed something done for my daughter!!! I asked her what was so hard other than setting up recipes that computer software generated!!!! What is so hard to ask the nurses to collect blood samples? What would be so hard for me to check her ketones in her urine? WHAT IS SOOOOOO HARD ABOUT IT!!!! MY DAUGHTER WAS SEIZING!!!!I ASKED IF THERE WAS ANOTHER NUTRITIONIST THAT CAN START ALIYAH ON THE DIET... she said no, she was the only one qualified/experienced...... At last she did say how she will try to fit us in during our stay there!!!!

Dr. Matthews came in our room and told us we were going to start the diet... also mentioned how Karla cried (I felt awful.. I really did) and how we should give her a break! Well who was going to give my daughter a break???? I will do anything to get things going in order to get Aliyah seizure-free even if I have to step on a couple of toes for my baby.... Aliyah can scream out "Help me"... she can't say "I want these seizures to stop"... I am her voice.....

When Karla came in we thanked her so much!!!! We are fortunate she has a BIG HEART!!!! I just hope she knew I was acting like a mommy / human... Anyone put in my shoes would have done the same .... When you are denied the possibility of your child becoming better and asked to wait a couple of weeks for that possibility..... no parent should have that patience!!!! YOUR CHILD IS IN NEED OF SERIOUS ATTENTION!!!!!

Today I still appreciate Karla and Dr. Joshie!!! :)

The first day:

Karla gave us literature to read: The Ketogenic Diet by John M. Freeman and a pamphlet that explained the diet. She also gave us a weighing balance that measures grams. and a Food ittinirary for the next 3 days.