EA: How did the ketogenic diet help Charlie?
JA: After the last doctor it was so hopeless. So I started doing research on my own. I learned there was an experienced ketogenic dietician at Johns Hopkins so we took Charlie there. He went from having 100 seizures a day to having none, after 48 hours on the diet. Charlie was off all of his drugs within a month. It was just a miracle.
EA: How does the diet work?
JA: That's a question that has fascinated a lot of people and no one knows the complete answer. In April 2008, we are sponsoring the first-ever international symposium on dietary therapies for epilepsy and other neurological disorders. There are going to be scientists, clinicians, epileptologists and dieticians from all over the world. Researchers believe the diet may also have positive effects for other neurological conditions, like Alzheimer's and Parkinson's.
EA: What does The Charlie Foundation do?
JA: One of the things that we focus on more than anything is training dieticians. Now we have a full-time dietician who works for us and she literally travels the world, going hospital to hospital. She works with dieticians and neurologists and helps them set up a ketogenic diet program. Wherever our dietician goes, she's received like a hero. And she now has a computer program that helps calculate ketogenic diet meal plans.
EA: What should parents do who are interested in trying the diet for their child?
JA: First, go to our Web site: http://charliefoundation.org/. Second, read The Ketogenic Diet: A Treatment for Children and Others with Epilepsy by John M. Freeman, M.D., 4th edition. It is a very good general introduction to the diet. We also have a DVD about the diet that we send out to people. The diet is not something you can try without guidance, and you need to find a doctor who knows about it and it needs to be done with a dietician.
EA: What's the most rewarding part of The Charlie Foundation for you?
JA: We got Charlie back, so we were paid ahead of time. He's been seizure free for 10 years. He's carefree and happy as a lark. Mostly I started it all because I was just so grateful and I couldn't figure out a better way to show my gratitude for what happened to Charlie. I know how other parents feel.
EA: What are most important things that people with epilepsy and their caregivers should know?
JA: The medical destiny of all of us is largely in our own hands. Be proactive.