Note from Randy, Our-Kids Administrator, October 2008:
This is a very very old FAQ, I believe posted by one of the original members of Our-Kids, back in 1995. This is really not so much a FAQ as a couple of case histories and some pertinent information regarding the diet. The only reason this page remains is due to the large number search hits the page still gets. For more current and relevant information, I recommend you go to The Charlie Foundation, http://www.charliefoundation.org/ and read about the Ketogenic Diet from that site, http://www.charliefoundation.org/frames/diet/overview.php Charlie is one of the first children to use the diet and his folks founded the Charlie Foundation to provide further education and information regarding the diet. Also, see the group at http://health.groups.yahoo.com/group/ketogenic/
KETOGENIC DIET FAQ:
The ketogenic diet has been around in the medical literature for well over 70 years. It was replaced when the modern anti-convulsants became available, even though it has a very good success rate at controlling seizures. In some cases it is actually better than drugs at controlling seizures. It has a success rate of 75%. Stopping seizures in 50% and further reducing them in 25% of cases. Most kids can stay on the diet two years, get off it and never have another seizure again. The diet works best in children under ten. They are less likely to cheat and young children can maintain ketosis better than adults or older children.
The diet mimics the effects of starvation. it has been known for centuries that fasting has a beneficial effects on seizure control (there is a reference to such in the New Testament). Doctors at the Mayo Clinic came up with a way to induce the effects of starvation (fat burning, ketosis and a change in blood Ph levels) by feeding the patient large quantities of fat and limiting protein and carbohydrate. the diet has to be rigidly controlled as any deviation can throw the patient out of ketosis and produce a seizure.
My daughter eats a diet of 75% of her calories coming from fat. Surprisingly, children on the diet remain small and thin. There are no associated heart problems, since the fat is all burned up and not deposited. The diet is deficient in many vitamins and in calcium, so a good (carbohydrate-free) vitamin supplement in essential.
Eliana was diagnosed with Infantile Spasms at 6 months of age. She had not rolled over, was not using her hands, and was becoming increasingly stiff and spastic. She was losing the ability to hold her head up, and suffered violent jackknife spasms. We were told that she would probably grow up severely retarded with many physical problems.
The first drug we tried was ACTH. Ellie became withdrawn and irritable, and stopped making eye contact. She cried all day and all night, except while nursing. She had fits of uncontrollable rage so bad that another customer in a grocery store accused me of abusing her. Though the ACTH moderated her EEG somewhat, and the seizures were somewhat less violent, they did not decrease in frequency, and as she suffered from a half dozen illnesses at once due to her weakened immune system, her developmental skills dropped to nothing.
I left New Orleans and spent 13 weeks in Los Angeles looking for answers from one of the top researchers in infantile spasms. He put Ellie on a DOUBLE dose of ACTH. She didn't sleep, she didn't respond to anyone, she developed the extreme cushingoid features associated with the drug. She had thrush so bad from the lowered immunity, that the entire inside of her mouth, her neck and face was white with fungus. Double dosing did not work either. We considered brain surgery, but the PET scans were inconclusive (I can't believe we actually contemplated removing half of my daughter's brain). We then tried Tegretol. Ellie's seizures stopped for two months, and she began to develop, smiling again, learning to roll over and to sit up. Then, at one year (on my older daughter's third birthday) Ellie had a breakthrough seizure. Her seizures rapidly climbed back up to 20 a day. We were devastated. We experimented with dosage levels, but nothing worked.
Then someone on the Internet's epilepsy discussion group suggested that I read _Seizures and Epilepsy in Childhood_, which contained that wonderful chapter on the ketogenic diet. I had seen one brief reference to the diet in a medical paper when Ellie was first diagnosed, but when I brought it up to my pediatrician her response was "I would never put a growing child on this diet." End of story. But after reading the chapter in this book from Johns Hopkins, I went to the medical library and did some research on my own. Most of the references were in very old neurology texts and journals, but the more I read the more convinced I became that the diet was our answer. Felbamate was our only other option. In December of 1993 we had an appointment with her neurologist. She was reluctant to put her on Felbamate because she said that it hadn't been well tested in young children. I tentatively suggested the diet. After discussing it with her colleagues, she told us she was very willing to give it a try.
In January of 1994, Ellie was hospitalized to begin the diet. It took a month of fine tuning until she had a day free of seizures. At first,(the dietician mistakenly told us that protein did not need to be restricted, but upon re-reading the papers we phoned our neurologist who confirmed the error. Elimination of Tegretol also helped, because of its high sugar content.
My parents were visiting at the time and I remember very clearly the whole family was sitting watching TV when my father suddenly said, "I haven't seen Ellie have a seizure today, have you?" Not one person in the room had seen a seizure. We watched her carefully for a few more days, but she remained seizure-free. She has been seizure-free ever since (down from 50 seizures per day at her worst).
Last Monday, almost a year after starting the diet, she had an EEG. The neurologist said it was _completely normal_! This child's EEG went from wild hypsarrythmia to COMPLETELY NORMAL because of a diet! She is now 2.5 years old, bright and curious, with no physical handicaps. She appears to understand much of what we say, and is even talking. We have high hopes that she will be able to lead a normal life, despite the dismal odds we initially faced.
'DATELINE', in its October 26, 1994 edition featured the 'Ketogenic' diet which has been used by the world famous JOHNS HOPKINS HOSPITAL and MEDICAL SCHOOL as a therapy for Childhood Seizure Disorders. 'Dateline' reported that miraculous cures were obtained in a large percentage of the patients who were placed on the high fat diet.
JOHNS HOPKINS has published a book on the subject which is available from the following:EPILEPSY DIET TREATMENT An Introduction to the Ketogenic Diet By John Freeman and Millicent Kelly Demos Publications 386 Park Avenue New York, NY 10016 Phone: 1-800-532-8663
The Physician in charge of Johns Hopkins Childhood Seizures Group is:Dr. John Freeman, M.D. Johns Hopkins Health Systems 600 N. Wolfe Street Baltimore, Maryland 21218 phone 410 955-9100
Alex is a 3-year old boy with an amazing head of thick, curly blonde hair. He's very tall, and he has always appeared to be in great health.
So, when Alex developed quick jerking seizures at the age of 10 months, even the neurologist didn't believe he had epilepsy. He was mis-diagnosed as having "Startle Disease"... a jerking reaction to loud sounds or stimuli. His EEG was abnormal, but the neurologist believed Alex could just be one of those people who has a "normally abnormal" brainwave pattern.
However, as time went on, Alex would continue to have this "startle reaction" even when there was no stimulus. At that point, with the help of a video-monitored EEG, he was re-diagnosed with myoclonic epilepsy.
To treat the epilepsy, doctors tried every drug available. Most of them would work for two weeks, then they would become totally ineffective. By the time we ran out of drugs to try... Alex was having five seizures a day while on Neurontin and Dilantin simultaneously.
In January of this year (1995) Alex became the first patient to undergo the ketogenic diet at Stanford. He spent five days in the hospital. Here's what happened when he came home from the hospital:
By the second day home... he was off all drugs.
He had a total of five seizures in the first two weeks home... and he hasn't had one since.
He's continued to eat three meals a day consisting mainly of fat... but "tastefully combined" so Alex really enjoys what he eats.
For example, at breakfast each day he has nearly an entire egg, scrambled with butter, fruit, and cream diluted with a little water to drink.
For lunch, he loves a little bowl of popcorn with lots of butter and five strips of bacon.
For dinner he might get a little steak, broccoli, lettuce with mayonnaise dressing, and diluted cream to drink.
That's a typical day of meals for Alex... and he seems very happy. Developmentally, he's never been better. His language slipped considerably while on all the drugs. Now, he's talking in long, complete sentences. He's riding a two-wheeled bike with training wheels and he's roller-blading (kiddie-style).
The prognosis for myoclonic epilepsy is not good. 95% of the children are retarded. However, the diet seems to be lifting Alex out of that dismal prospect. Everyone who knows him sees a remarkable improvement.
There is also a foundation devoted to the dissemination of information on the Ketogenic diet and the miraculous results that are achieved in many patients. It was founded by the father of a boy, 'Charlie', who had excellent results with this therapy after being almost devastated by some of the more traditional therapies.
The Foundation is as follows:The Charlie Foundation 1223 Wilshire Blvd., Box 815 Santa Monica, California 90403
Thanks for your request. Additional material on the diet include a new book, _The Epilepsy Diet Treatment, An Introduction to the Ketogenic Diet_, written by Dr. John Freeman, Millicent T. Kelly, R.D., L.D., and Jennifer Freeman. The book is available through Demos Publications, 386 Park Avenue South, New York, New York, 10016, or by calling 1-800-532-8663.
There is also a computer program to help compute the diet developed at Hopkins. For copies, contact the Pediatric Epilepsy Center, the Johns Hopkins Medical Institutions, Meyer 2-147, 600 North Wolfe Street, Baltimore Maryland, 21287-7247.
Additionally, there is a Keto Klub newsletter, designed for parents and families on the diet. To receive or contribute, write to Keto Klub, 61557 Miami Meadows Court, South Bend, Indiana, 46614.
For more information, contact
Jan Silbermann firstname.lastname@example.org or
Diane Martinet email@example.com