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Monday, September 15, 2008

In 2004, an adorable young girl named Grace brightened the floors of Johns Hopkins Hospital when I had the pleasure to start her on the ketogenic diet. She likely had myoclonic-astatic epilepsy (Doose syndrome) and within days was a "super-responder", becoming seizure-free permanently. Her sister and cousins wrote a book called Grace’s Magic Diet which I was so impressed with that I still use it today to show some new children about to start the diet. I think it is perfect to have this book on Keto News for families to all have access to, and Grace’s parents agree. The following is written by her parents:

"Grace was 3-1/2 years old when she was started on the ketogenic diet. Her speech was delayed at 2 years old but after a year and a half of seizures and multiple seizure medications she was almost completely nonverbal. To help her understand major events in her life we turned to social stories. For example, we wrote her a story explaining how her grandparents were going to baby-sit her and her older sister when we went on a trip. In another story we described an upcoming visit to the hospital for an MRI.

So when it came time to prepare Grace for the ketogenic diet we turned to a social story again, only this time we made it a family affair. We titled the story, Grace’s Magic Diet and pasted the text of the story on separate blank pieces of paper. We then handed out the pages of the story to Grace’s big sister Kate and her three cousins, Paige, Steven and Michael for them to create the illustrations. The original intent of the story was to help Grace, but by asking the other children to participate it helped their understanding of epilepsy and the Ketogenic Diet as well. They asked many questions about the diet so their drawings would be accurate. Illustrating the story empowered the children by making them part of Grace’s care in a tangible way. Now, over two years after Grace was weaned from the diet, the story of Grace’s Magic Diet has proved to be beneficial in yet another way. Grace, now 7, is very verbal and can read Grace’s Magic Diet by herself. It helps her remember and understand that chapter of her life and the challenge she and her family overcame."

Authored by: Eric Kossoff, MD on 9/2008
Reviewed by: Steven C. Schachter MD on 9/2008
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