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Aaron’s Story

Our son Aaron had his first seizure when he was 4 years old, April 2008. His diagnosis was Doose Syndrome. Over the course of 8 months he was put on several different meds or med combinations and his verbal abilities were going. He was also having behavior problems. By Christmas 2008 he was on 3 meds and having multiple seizures a day, needing his rescue med daily. Our neurologist said our only hope was the Ketogenic diet. We spent 5 days in the hospital adjusting to the diet and within 7 days he was seizure free and down to one med. He has been seizure free for one year, 3 months and is down to half a dose of one med. His verbal abilities have returned and he is doing great academically. He will go off the diet or med December 2010 and will be med and diet free some time after that. The diet is a miracle, we are so fortunate our neurologist believes in it and that the Charlie Foundation is here to support parents on the journey to use it. I will admit it is a commitment, it takes time and can be frustrating but so are seizures and you can’t plan around seizures like you can the diet. Aaron does such a great job on the diet. I thought starting school could be a real challenge but all has went well. He still has some behavioral issues but it is such a blessing to have him “back”. I would never wish the diet on any child but I feel so blessed that we were told about it and that it worked so well. Aaron talks all the time about what he will eat when off the diet but he is willing to wait knowing no seizures is worth all the sacrifice he has had to make.

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