A few lessons that we have learned over the past month: Lesson 1: Make sure Reagan is sent to school with spare food. I can’t exactly remember how we came to this conclusion, but I believe Reagan was so hungry one day at the beginning that she ate her snack with her lunch. Then, when … [Read more…]
January 9, 2017 – Start Keto Diet In the days leading up to our hospital admission, I thought, for some overprotective, parenting-inclusive reason, that it would be a good idea to explain to Reagan that we were going to have an overnight with the doctor, and that we were going to start eating “magical” food … [Read more…]
November 22, 2016 – Meeting with the Ketogenic doctors Today is the day. The day we have been waiting for as soon as it was apparent that the medications were not working. The day that we are hopeful will set us on a new path that could change everything for Reagan and give her a childhood … [Read more…]
Reagan has been on Zonisamide since May, slowly increasing the dose, 2 weeks at a time, for 12 weeks, to reach her current dose. She has been on Onfi since August 2016, slowly increasing the dose, 2 weeks at a time, for 10 weeks, to reach her current dose. Every time we increase a dose, … [Read more…]
September 14, 2016 changed our lives more than we could have ever imagined. We had checked into Children’s Hospital to do a routine MRI (our first at Children’s) and another EMU Study. We were fortunate that they were able to hook up Reagan’s electrodes while she was still under from the MRI, which cut down … [Read more…]