BOOK EXCERPT
HONEST MEDICINE:
Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases
Introduction: The following is a chapter from Julia Schopick's bestselling book, HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. This chapter was written by Jim Abrahams, Hollywood writer/director of several iconic movies, the most famous of which is Airplane! In 1993, something not-so-funny happened to Jim and his family, when one-year-old Charlie developed epilepsy. This is Jim's story. It has been updated, and is being published in two parts in this magazine: Part 1 in November, and Part 2, in December.)
CHAPTER 7 JIM ABRAHAMS: CHARLIE'S DAD, DIRECTOR OF THE CHARLIE FOUNDATION
Dr. Rumack: Captain, how soon can we land? Captain Oveur: I can't tell. Dr. Rumack: You can tell me, I'm a doctor.
When my partners and I wrote that line for our 1980 movie Airplane!, I had no idea of the reality we were tapping into. Fifteen years later I found out.
"IMPRESSION: It is my impression that Charlie has a mixed seizure disorder, most likely a variation of Lennox-Gastaut syndrome. Parents are fully aware of the ramifications of this diagnosis. Although there are many traditional combinations and permutations of drugs that could be used here, I agree with the current approach. It is my understanding that the next drug to be tried is a combination of Felbamate and Tegretol with which I have no problem. I would also consider the combination of Felbamate with Valproate with perhaps a benzodiazepine. In addition one wonders if the Felbamate could be pushed to an even higher dose than it is now, since we really do not know what the maximum dose of Felbamate is in young children. Another possibility is high dose Valproate monotherapy. One other alternative therapy which I have mentioned to the family, but only reluctantly because of the high incidence of side effects is high dose ACTH. The problem is that while high dose ACTH may be effective in stopping the seizures, they almost always recur as the dose is tapered. This makes one wonder if the risk-benefit ratio justifies the use of this somewhat dangerous mode of therapy. Finally, I think that if all pharmacological or therapeutic modalities fail, I would seriously consider a corpus callosotomy [an irreversible operation that severs the two halves of the brain] on this child. A corpus callosotomy would not be curative of all the seizure types, but may help the most troublesome part of his seizure complex, i.e. the drops."
– Written by Charlie's fourth pediatric neurologist, October 1993, two months before he became seizure- and drug-free on the Ketogenic Diet.
For those of us who have had children with difficult-to-control epilepsy, it is quite literally impossible to put the feelings into words. Sadness, frustration, agony, helplessness, anger, pain, despair. These words, even when bunched together, fall short. It's not just the seizures, or the drug side effects, or the failed surgeries. It's standing by and watching your child slip away – watching the lights go out – one day, one hour, one minute at a time.
That's how it was with my son, Charlie. His first seizure was on his first birthday, March 11, 1993. Over the following months he tried every available anticonvulsant drug medication. The seizures got worse. Dozens, frequently as many as a hundred per day. Brain surgery didn't work either.
For me, the hardest part of Charlie's Title: Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases Author: Julia E. Schopick Publisher: Innovative Health Publishing Publication Date: January 2011 Paperback: 310 pages ISBN-13: 978-0982969007 Available at: amazon.com and barnesandnoble.com seizures was seeing his eyes. One minute they were bright, clear, smiley. A split second later they were dull, unfocused. . .dead. Then they'd roll back. It was like watching him die. The rest of the seizure, whether it was a quick drop or his body stiffening and shaking with a high piercing noise, was terrifying and heartbreaking. But, for some reason, what has stuck with me the most were his eyes. No matter how many times we saw them, it never got easier for Nancy and me.
We were deep into the drug regimens when our neurologist told us the best chance to stop the seizures would be a surgery to drain fluid from Charlie's left ventricle. Turns out that seizures don't emanate from the ventricles of the brain, but we trusted him and his credentials. Charlie weighed about eighteen pounds on the day of the surgery. They promised Nancy he'd be asleep when they took him into surgery. But he was wide awake and crying when she had to hand him over. We were told the "procedure" was relatively simple, painless, and would last less than an hour. Three excruciating hours later, someone came up to the waiting room and told us that Charlie was having a bad reaction to the morphine, and that we needed to wait a little longer.
"Morphine?!" we asked. "For what?" "Pain." "How much pain?" "It's hard to tell. He was uncomfortable." "What was the bad reaction?" "Hives."
When we finally were allowed to see him in the recovery room he was all red and swollen. Two days later, his seizures returned. Charlie saw four pediatric neurologists in three cities. Over nine months, the seizures that had begun so subtly mounted in severity and frequency into the thousands. The seemingly endless drugs and drug cocktails altered his personality, development, appetite, sleep, complexion and bowels. We watched helplessly as he began to fade away. The fourth neurologist, quoted above, basically told us his epilepsy was incurable – that Charlie could expect a life of continued seizures and "progressive retardation." Nancy and I had to pull the car over on the way home because we could not see through our tears. We lost hope.
BUILDING IT: The Charlie Foundation had a clear idea of what we wanted to accomplish, but there was no road map. We tried a two-pronged approach, focusing on both public and medical awareness.
Then, in an effort to figure out how Charlie and his brother and sister and Nancy and I were going to get through the rest of his life with such a bleak prognosis, I went to the UCLA medical library (those were pre-Internet days) to do some reading. This was not in an effort to find a cure – after all, we had taken Charlie to many of the leading experts in the country, and they had all concurred about treatment options: Medications and surgery were the only alternatives.
I went to the library to figure out how Charlie and our family were going to cope with what we were told lay ahead of us. Neither science nor research come naturally to me, but here is a sampling of the medical information I found – reports and studies about the Ketogenic Diet – on that one day in the medical library at UCLA in the fall of 1993. What confused me the most was that for years – even generations – the Ketogenic Diet had been consistently reported as helping a majority of the thousands of children who had tried it. Yet, though they all knew about the diet, not one of Charlie's doctors had even mentioned it to us.
Charlie's doctors had even mentioned it to us. "Thirty seven patients with essential epilepsy have been treated for periods of from three to thirty months by means of a ketogenic diet. Twelve have improved and nineteen have been free from attacks since institution of this treatment. Three patients remained free from convulsions for three to eight months and were not heard from again." – New England Journal of Medicine, M. G. Peterman, MD, Mayo Clinic, April 4, 1925.
"Of thirty patients treated with the ketogenic diet, 26.6 percent have remained free from attacks for long periods and have resumed an unrestricted diet." –"Epilepsy in Childhood – Results with the Ketogenic Diet," Lawson Wilkins, MD, The Journal of Pediatrics, January through June, 1937.
"Results of treatment with ketogenic diet in 530 cooperative patients: No known attacks 5 to 36 years: 162 (30.6%); Improvement: 128 (24.1%); Failure 206 [38.9%]." – Convulsive Disorders in Children – With Reference to Treatment with Ketogenic Diet, Dr. Haddow M. Keith, Mayo Clinic, 1963.
"As of 1958, we had treated 426 children with the ketogenic diet. Seizures were controlled in 52%; in an additional 27% there was marked improvement; 21% did not respond to treatment. Since 1958 we have treated an additional 575 patients with the ketogenic diet regimen and the results relative to seizure control were essentially the same as those reported previously." – Comprehensive Management of Epilepsy in Infancy, Childhood and Adolescence, Samuel Livingston, Johns Hopkins, 1972.
"Before using the ketogenic diet, 80% of the patients had multiple seizure types and 88% were treated with multiple antiepileptic drugs; these children were among our most intractable patients. Thirty-eight percent of these children had a decrease in seizure frequency of at least 50% and 29% had virtually complete seizure control." – Efficacy of the Ketogenic Diet for Intractable Seizure Disorders: Review of 58 Cases, Kinsman, Vining, Quaskey, Mellitis, Freeman, Johns Hopkins, 1992.
Astonishingly, the above-quoted 1992 article had been published in Epilepsia, the premiere medical epilepsy journal, just a year before Charlie got sick. It was hot off the presses. Different doctors, from different hospitals, in different decades used the identical therapy on a similar patient population and came up with nearly identical results. And no one told us. How could that possibly be? When I broached the subject to Charlie's primary neurologist and mentioned the Ketogenic Diet and another possibility we were considering – an herbalist we had heard about who worked out of a strip mall in Houston, Texas – he said, "Flip a coin, I don't believe either will work." For the final time, we took his advice. We flipped the coin. It said to go to Texas. We did, and Charlie's seizures continued.
At last I called Dr. John Freeman from Johns Hopkins, one of the authors of the 1992 article, and co-author of the book, Seizures and Epilepsy in Childhood: A Parent's Guide. He suggested we bring Charlie to Hopkins. We did and Charlie was started on the diet. He went from having dozens, frequently as many as one hundred seizures a day, to zero within forty-eight hours. He was off his four anti-convulsant medicines within a month. Five years later he was weaned off the diet and has remained seizure- and drug-free while eating a regular diet to this day. Charlie is now a pre-school teacher in West Los Angeles, has played the piano for eighteen years, and is also a boxer. He has never had another seizure. The Ketogenic Diet cured his epilepsy.
What makes Charlie's story unusual is not that his seizures were difficult to control, or that the medications had bad side effects and failed to help. There is a world epilepsy population of over 60 million people and most of those people start having their seizures as children. Yet only a tiny fraction of 1% of the parents whose children would benefit from a Ketogenic Diet therapy ever hear about it. Let that sink in. How many children worldwide have suffered unnecessarily because their parents were uninformed or misinformed about the diet since 1925? What is the collateral damage? It's a human tragedy of incalculable proportions.
What does make Charlie's story unusual was that he eventually got to the Ketogenic Diet. Though it had been a first-line therapy for children with intractable epilepsy in the 1930s and '40s and '50s in America, it began to fall into disuse when anti-convulsant medications came along. By the time we took Charlie to Hopkins in 1993, the diet was on the verge of extinction. Hopkins had one of two or three Ketogenic Diet programs in the world, and they were only initiating a handful of children every year. Later, when we asked Charlie's neurologists why they hadn't told us about the diet, these were their top three answers:
1)"The Ketogenic Diet is a high-fat diet and therefore may have health consequences." 2)"The Ketogenic Diet is too difficult." 3) "There is no science behind the diet." 1) Health consequences? The demonization of fat by the cardiology community and the American Heart Association has long been exposed and debunked: youtu.be/GsoidXRiHQw. As the quote that begins this chapter indicates, Charlie's doctors were considering several extremely dangerous treatment options: yet more drugs and drug combinations in higher doses, with terrible side effects; ACTH, a brutal, multi-thousand dollar per day injected hormone therapy; and cutting his brain in half, i.e. a corpus callosotomy. This surgery is irreversible and precludes any possibility of a normal life—or even seizure freedom. The safest, most effective option for Charlie—the Ketogenic Diet—wasn't even discussed.
2)Too difficult? Shouldn't that be the family's decision? Is the standard of care really that a practitioner can decide what therapy is "too difficult" for a critically sick child's parents to undertake? Certainly the diet was challenging, but it was a walk on the beach compared to the trauma Charlie and my family had just experienced. Nancy and I assumed a system of informed joint decision making between physician and patient. We were wrong.
3) No science? I find this the most insidious of all the arguments. When we were told there was no scientific understanding of the mechanisms of the Ketogenic Diet, we assumed there were scientific explanations of how the drugs worked. Wrong! There is no science behind any of the drugs or drug combinations Charlie had been prescribed – unless you want to include rodents, cats, and rabbits. It is illegal to scientifically study medications in children younger than four. Plus there is no scientific understanding of the interactions of endless drug combinations on people of any age. As Dr. Freeman from Johns Hopkins said, "Treating epilepsy in people with drug resistant seizures is 80% art and 20% science." To arbitrarily represent that medications are science, and to use that misrepresentation as an argument against the Ketogenic Diet, is a cruel double standard. In fact, statistically, after the failure of two medications, the diet has a far greater chance of success than any medication or combination of medications.
I found myself in an extraordinary position. I had experienced the horror of Charlie's childhood epilepsy. I had stumbled across a dying medical therapy that could benefit most and cure many – but that somehow, unfathomably, did not fit the model and constraints of modern Western Medicine. And I knew that Charlie was but one of millions of children who were in the same position. So, Nancy and I started the Charlie Foundation in order to elevate awareness: charliefoundation.org.
At its inception in 1994, The Charlie Foundation certainly had a clear idea of what we wanted to accomplish, but there was no road map. So we adopted a sort of "if you build it, they will come" attitude. We decided to try a two-pronged approach, focusing on both public and medical awareness.
Knowing the incredible power of parentand patient-driven movements, as well as the desperation of parents who walked in our shoes, we first dedicated ourselves to a campaign of public awareness. My background in the movie industry proved valuable here. We produced a 45-minute video hosted by our friend Meryl Streep, entitled "An Introduction to the Ketogenic Diet." The video is now online, and millions have seen it ( youtu.be/2_8D1hH7mzo). As a result, Charlie's story was picked up by the media. Charlie and the Ketogenic Diet were featured in People Magazine, Dateline NBC (on three occasions), Entertainment Tonight, USA Today, The Wall Street Journal, Newsweek, and countless other periodicals. We were reaching the public.•
[Editor's Note: The rest of Jim and Charlie's story will appear in the December issue of this publication.]
ABOUT THE AUTHOR:
Julia Schopick is the creator of the award-winning blog, HonestMedicine.com, and has been a published writer and a public relations consultant for more than thirty years. When her husband Tim Fisher became ill in 1990 with a cancerous brain tumor, Julia became his medical advocate and began writing on topics relating to health and medicine. Her articles and columns were published in American Medical News (the AMA publication), SEARCH (the newsletter of the National Brain Tumor Foundation) and Alternative and Complementary Therapies. Her work and essays have been featured in the British Medical Journal, Modern Maturity and the Chicago Sun-Times.
Title: Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases
Author: Julia E. Schopick
Publisher: Innovative Health Publishing
Publication Date: January 2011
Paperback: 310 pages
ISBN-13: 978-0982969007
Available at: amazon.com and barnesandnoble.com