2012 International Symposium on Diet Therapy for Neurological Disorders
Consecutive conferences for families and professionals near Chicago, Illinois Professionals’ meeting: Sept 19-21 • Family meeting: Sept. 22
This is the third International meeting organized to gather people from around the world who are invested in the use and advancement of diet therapies for epilepsy. Attendance thus far includes people from 30 countries. We have reached capacity for the Symposium at the Hilton Indian Lakes Hotel and have had to book rooms in a third hotel nearby. We’ve received over 50 abstracts on clinical and scientific topics from our attendees. Many testimonials from those who have experienced diet therapy for epilepsy will be highlighted. A tasty low-carb bread recipe is going to be revealed and taste samples provided. The Charlie Foundation staff is already losing sleep over the excitement and last minute details; we can’t wait!
Frequently Asked Questions
Q: Will Meryl Streep be at the Gala Event, September 21st?
|A: Meryl Streep will be at the Friday night Gala in person! She starred in the made for TV movie First Do No Harm, written, directed and produced by Jim Abrahams of The Charlie Foundation. The movie is based on a true story about a family whose young son suddenly developed epilepsy. Meryl portrays the mother of this child in the film. After thousands of seizures, medical tests, treatments and serious reactions to anti-seizure medications, the family leaves a hospital against medical approval to take the child to John’s Hopkins Hospital for the ketogenic diet and the child becomes seizure-free. The boy who was depicted in the movie is now an adult and will also appear at the Gala on Friday night! You may read more about Tim Intermitte on the Keto Kid link of charliefoundation.org|
Written by Fay LaFrage, Scott’s Mom
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 eat everything by mouth AND we were able to wean him off his seizure-medication and his behavior medication. 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 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.
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.
Editor’s note: We are very grateful to Fay LaFrage for her volunteer role as a Charlie Foundation Moderator on our Community Forum. Fay’s endless wisdom from years of managing Scott’s diet therapy has helped countless people.
Visit the Keto Kids section to read about others who have benefitted from ketogenic diet therapy.
The Keto Recipe of the Month
Spinach Bites, created by: Dawn Marie Martenz
This is the tastiest way to serve spinach that I have found yet. No one in my house is a spinach lover and these were gobbled right up, even by my nonketo 5 year old! I served these with Walden Farms Ranch dressing. I did not include it in the calculation since some people cannot tolerate it. Make sure you calculate it in if you would like a dipping sauce. They were equally delicious on their own though! Recipe provides: 285 Calories, 6.5gm Protein, 28gm Fat, 1.5gm Carbohydrate, 3.5:1 ratio.
For more recipes, visit the Recipe section to find other tasty ketogenic foods.
Introducing Charlie Foundation Approved Recipe Logos
Recipes meet standards for ketogenic diet ratios and are professionally evaluated. Samples are taste-tested and perfected by 2 chefs. Gluten and casein-free recipes are identified for those who have allergies or sensitivities to either.
Look for these Charlie Foundation Approved seals when you browse our recipes.
STARTER KIT FOR THE KETOGENIC DIET >>$68
PARENTS GUIDE TO THE KETOGENIC DIET >>$10
English or Spanish versions. Includes recipes, sick-day guidelines and much more.