Scott was diagnosed with Lennox Gastaut Syndrome at age 3.
Over the years we tried just about all of the medicines and the medication combo's but nothing worked for long. The seizures continued and became worse. He also went into nonstop seizures a lot regardless of what we tried. After having his jaw broken and several teeth broke below the gumline during a drop seizure that required emergency surgery at age 6, he was started on the ketogenic diet while in the hospital.
Less than a week later we were on our way home seizure free for the first time in over 3 years. Within a few weeks though he had a few seizures and the diet was adjusted. Scott was on the diet the first time and doing great (seizure free and almost weaned off his seizure meds) when he developed a severe asthma attack that required daily steroids (which interferred with the diet) so we had to come off the diet. He had the VNS implanted and then we tried a couple more medications and medication combo's but these didn't work either.
Because Scott was doing so well asthma wise, while his seizures were getting worse, we decided to try the ketogenic diet again. At age 15 Scott started the diet for the second time Jan.16. 2005 and he became seizure free Jan.18, 2005. He became completely seizure medication and behavior medication free August 3, 2005. He was (and still is!) doing things we never thought possible! He went from having 100's of seizures a day and being confined to a wheelchair most of the time to running and riding a real bike without training wheels!
After being completely seizure free for 2 years and 13 days he went into nonstop seizures without warning. We realized that I had accidentally given him 9 meals that contained sweetened pineapple instead of unsweetened pineapple. I think I had became so used to reading labels that my mind simply didn't register what I was actually reading on the label.
Since then he has not been completely seizure free but now has one less than 30 second seizure every 4 to 6 months- usually when just going to sleep or while waking up- or he'll have a few mild seizure clusters when he is sick. He remains seizure medication free and is trying his best to catch up with everything he's missed over the years thanks to seizures.
The ketogenic diet has been our miracle.