Scott was diagnosed at three years old with an epilepsy syndrome called Lennox Gastaut Syndrome. Over the years we tried just about all of the anti-seizure medications and various combinations of these medications, but nothing worked for long. He also went into nonstop seizures regardless of what we tried. At age six, he had a seizure that caused him to fall. He broke his jaw and several teeth requiring emergency surgery. This is when he started on the ketogenic diet. Less than 2 weeks later we were seizure-free for the first time in over 3 years. I say ‘we’ because every time he had a seizure, it affected the entire family. Within a few weeks though, he had a few seizures and the diet had to be adjusted. Scott was on the diet and doing great (seizure free and almost weaned off his seizure meds) when he developed a severe asthma attack that required steroid treatment. The steroids affected the diet so we came off of the diet at age nine. He had a surgical device implanted (vagal nerve stimulator) in efforts to control his continued seizures. He was so weak that he couldn’t eat so he also had surgery to place a feeding tube. We tried several more anti-seizure medications and different combinations of these. Although Scott’s asthma improved, his seizures kept getting worse; we decided to try the ketogenic diet again.
At age 15 Scott started the diet for the second time. Initially, he received all of his nutrition through his feeding tube. He became seizure free in 3 days. Several months later Scott started begging for tastes of food to eat so our ketogenic dietitian incorporated small amounts of ketogenically balanced snacks for him. Over the course of that year, his strength improved and he was eating larger ketogenic meals which allowed us to become less dependent on the feeding tube. Eventually, he was able to return to eating all of his diet by mouth and the feeding tube was removed. Scott became completely seizure medication-free and was even able to eliminate his behavior medication in 7 months from the time we restarted the diet. He was doing things we never thought possible! He went from having hundreds 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, Scott went into nonstop seizures without warning. With help from another keto mom we realized that I had accidentally given him 9 meals that contained sweetened pineapple instead of unsweetened pineapple. After correcting that error, his seizures diminished.
Scott was on the classic ketogenic diet for a combined total of 9 1/2 years; the first time for 3 1/2 years and the 2nd time for 6 years 3 days. His last electroencephalogram (EEG) report stated “Normal awake and sleep EEG for age”. His last seizure was June 19, 2011 (5 months AFTER coming off the diet). We had to wait until Scott was off the diet for a few months and ensure that he could eat and drink a normal adult diet before his feeding tube could be removed.
Scott is now 23 years old and remains seizure-free, behavior problem-free, seizure medication-free, behavior medication-free, wheelchair-free, feeding-tube free, neurologist-free and continues to do things we never thought possible! He loves life and is trying his best to catch up with everything he missed.
This is a wonderful story. Our son Tate is 7. Originally had Doose syndrome. They are now saying LGS. He is noncompliant with his diet so we are placing a G tube. We are looking for some hope we could use it. What blood ketone levels did you find effective please? Thank you, Jim. Anything else you could share guidance etc would be much appreciated.
Thanks for your story. How are you today? seizure free?
Can you pls share how you doing now?