We had a very rocky start, the diet really caused her blood sugars to drop to dangerously low levels, and she got 2 stomach viruses in the first 2 months. Blech!! At that time, I was very pessimistic about any kind of success on the diet.
But once she was able to keep down the required formula, the diet began to work it's magic. Emily started having completely seizure free days in March and went SF for 103 days!! Her spasms have crept back on and off since then, but mostly off. We rarely see any spasms at all, and if we do, they are so mild we can hardly identify them!
Freedom from seizures has also made a miraculous difference in her development. Last year, Emily slept almost all the time. She was eating a bit by mouth, rolling some, and smiling more often. Now, she has much more awake time, she's holding her head up, her vision has improved - she focuses on objects and people and often makes eye contact, she is smiling all the time and laughing, she rolls, lifts her head up and props herself up on her arms while on her belly, she holds toys, puts them (and anything else she can get in her hands on) in her mouth, and in the past month she has started sitting UNSUPPORTED!!!!!! Unbelievable.
We are so thankful to the CHOP staff for continuing to recommend this diet and we're so glad we gave it a try. Emily has made such amazing progress and it is so awesome to watch her getting stronger and happier each day.
January 2009 (with my Aunt Nancy)