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. This symposium will provide a forum for extended discussions of implememation of various ketogenic diets. Our Family Day will highlight caregivers who have used the diets for their loved ones and experiences with different age groups. Plan to stay for the Benefit on Friday night honoring 3 time Academy Award Winning Actress, Meryl Streep.
Frequently Asked Questions
Q: Regarding the International Symposium this September, is Meryl Streep going to be at the Benefit in person?
|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 Benefit! You may read more about Tim in the Keto Kid link of charliefoundation.org|
A Shot In The Dark
By Tim and Christine Emerson
“Your daughter has bad seizures. If medicine doesn’t work you are in big trouble.” This is what we were told in April 2011 after Julia’s LTM, 3 short months after our formal diagnosis of epilepsy. She had already failed 3 Antiepileptic drugs (AEDs) and was taking a daily benzo which seemed to be the only thing that gave her some relief from her frequent grand mal seizures. This statement is what sent us on a mission to save our daughter or at least find some relief for her and our family.
In January 2011, after dealing with a viral illness that resulted in a high fever and multiple “febrile seizures”, we found ourselves in an ambulance for a seizure that lasted greater than 20 minutes despite high doses of diastat. Julia was diagnosed and placed on her first AED in the emergency department at age 4. We were to administer rescue meds and keep her on a daily benzo until her medication levels were therapeutic. Unfortunately it wasn’t that easy. Julia’s seizures progressed despite high doses of medications and frequent rescue meds and each EEG continued to deteriorate.
We moved quickly through the first line of AED all with no relief, only horrible side effects. The bright smiling 4 year old we had only a few short months ago had quickly vanishing behind a haze of side effects from CNS depressants and almost daily grand mal seizures. Some of the medications made Julia’s seizures worse and more frequent. She experienced Stevens - Johnson syndrome from a low dose of lamictal which took 2 months to resolve. Depakote dulled her personality and ultimately caused her ammonia to be so elevated she became encephalopathic. She gained weight, lost her long thick hair along with her smile that could light up a room and melt a person’s heart. She required constant supervision and hands on care. She was a shell of the little girl we had once known.
At one point we inquired about the keto diet, the response was “the diet is hard and kids don’t tolerate it very well.” At that point we were not well educated about epilepsy and so distraught we pressed on with the next medication while waiting for a spot at our children’s hospital to start the diet. We took that summer to travel and obtain second opinions from highly regarded epilepsy teams. When we were done the consensus was the same, decrease the depakote and begin the diet. Julia had a diagnosis of refractory symptomatic epilepsy. She had regressed in almost all of her milestones and daily activities that were once so easy for her to complete became almost impossible.
August 2nd 2011 (a 6 week wait) we were admitted to start the Ketogenic diet. She was amazing and made us so proud!! She responded well to the diet and had 10 seizure free days, the longest stretch since her diagnosis in January. We were scared but hopeful. Things didn’t go so smoothly after that. We experienced many issues and a relapse with her seizures. We found out the hard way about manufacturers changing ingredients, hidden carbohydrates and how small things really can affect children on the diet. The next three months we battled success along with setbacks due these issues and winter illnesses.
After recovering from a bought of pneumonia things got seemingly better. With only 1 break through seizure in 6 months, she is nearly medication free, has come out from behind her drug induced haze and now is thriving. She has learned to ride her bike, swing, read, is making jokes, laughing, regaining strength and stamina, has improved memory and recall and uses self control. These were the things that vanished during her time on the AED trials of the past year. At some point we wondered what was worse, the seizures or the medication. We now believe we know that answer. Her blank eyes and lack of facial expression have been erased by eyes filled with life, happiness and determination to fight this disorder.
It took us 4 months to understand and become educated enough to feel confident in what we were doing. There is no doubt the Ketogenic Diet is hard but the alternative for Julia was harder and for us was simply unacceptable. The Ketogenic Diet gives your child a quality of life, not centered around food but rather on living, playing and smiling. The diet gave us Julia back and we thank God everyday for her and for the strength to carry on! Friends agree, claiming to have witnessed a miracle this past year, from our darkest days to watching Julia exit kindergarten at academic levels preparing for 1st grade!
Lastly, thank you with much love to Delaney, Julia’s older sister, for walking this journey with us and taking such great care of her sister.
Several months ago, we asked Julia’s epileptologist what his feelings were when we started the diet. His response was simply “I thought it was a shot in the dark.” We are glad we took the shot!
Visit the Keto Kids section to read about others who have benefitted from ketogenic diet therapy.
The Keto Recipe of the Season
Kale is a nutrient-packed vegetable loaded with Vitamin A, C and K, calcium, and antioxidants. Flat leaf and curly leaf varieties are available. The curly leaf kale works best in this recipe to better resemble snack chips. Kale chips are a delicious alternative to the high carbohydrate and high glycemic index of potato chips. The values for this recipe have been determined by measuring and weighing the kale chips before and after spraying with oil and after baking. 3gm Baked Kale Chips provides: 14 calories: 0.4gm protein, 1gm fat, 1gm carbohydrate.
- Kale – curly leaved (Scotch Kale)
- Oil – such as olive, grapeseed or canola. We recommend using a canned spray or a spray pump that you can put oil into (carried by cooking stores).
- Wash fresh kale and allow to dry completely – a salad spinner works great.
- Remove the rib that runs through center of leaf.
- Lay pieces on a jelly roll pan that has been covered with parchment paper.
- Spray lightly with oil then turn over and spray opposite side.
- Using scissors, cut leaves into approximately 2x2 inch pieces.
- Bake for 15-20 min at 350°F. Test for crispness by bending a leaf with a tongs; they should be thin and crackly. Bake several minutes longer if they are soft and bendable. Do not let the leaves turn brown, they will be bitter.
- Sprinkle with salt after baking – adding salt before baking will result in soggy chips.
For more recipes, visit the Recipe section to find other tasty ketogenic foods.
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.