Keto Journey Day One

Today is Monday, June 4, 2012 and we were admitted to Kosairs Children Hospital in Louisville, Kentucky this morning. We were at this hospital for a month in December 2010 when our daughter Lainey, who had just turned one years old, first got sick with her initial illness of encephalitis which caused her stroke and subsequently is why she has seizures now.  We were also her a year later (Jan. 2012) for a week when she was diagnosed with infantile spasms (IS) and we began ACTH treatment. Last week we stayed one night for her 23 hour EEG. So were are familiar with the layout of the hospital and know a lot of the nurses and staff, which makes it nice when you want extra stuff like pillows and whatnot.  But nevertheless it stinks to be stuck in a sterile room for a couple of days with no windows to open when the weather is actually nice outside. We are here to start the ketogenic diet because she is not responding to the seizure meds. She is on Keppra, Topomax, and Clonopan and still has breakthrough seizures a couple of times a day. Mainly when she awakes first thing in the morning or from a nap, and also random times throughout the day. Our neurology team recommended the diet, which I had already researched when she had IS. The Web site www.charliefoundation.org is an awesome resource for patient information. I found two books on Amazon as well and ordered them, The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet by Dawn Marie Martenz, Laura Cramp and Keto Kid: Helping Your Child Succeed on the Ketogenic Diet by Deborah Snyder. So I am looking forward to inhaling all that information when they arrive.

The dietician came up during lunch time and brought a scale to measure everything in grams. She had a specified amount of fats and protein/carbs in a ratio. Lainey's first keto meal would be 2:1 so we would be slowly introducing her body to ketosis. And then it would increase to 3:1 over the next couple of days. Lainey had a little, I mean little bowl of tuna with a whole lot of mayo. And then she only got two tablespoons of applesauce and about an ounce of KetoCal which is a special drink formulated for the diet much like a pediasure. Luckily Lainey loves it, which means she won't need to consume a lot of full butter or mayo. It was really easy to measure and when I go home I will use a program to plan out her meals and amounts of food in grams. Slowly my anxiety is waning and I am already feeling more confident about taking this on. However, we do have to take her blood sugar before meals and then twice daily for two weeks when we get home. We had a horrible experience with the blood glucose monitor during her ACTH treatment, so I pray this time it goes more smoothly. And they want to put an IV in Lainey while we are here in case her blood sugar drops really low. We tried to fight them on this, but then nurses won out when they explained that in the mornings she could have such low blood sugar that even giving her glucose to drink wouldn't work. So I am waiting for the IV to come in soon. Right now it is almost 3 in the afternoon and Lainey is snoozing away and the dietician should be here a little later to prepare dinner.