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.
