Epilepsy and the Ketogenic diet---Why was it hidden??????

Epilepsy and the Ketogenic diet---Why was it hidden??????

Satan maybe? Or perhaps evil organised medicine, part of the PMIC? Assuredly
both. --rb
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John Larson reports;

July 22 - Jim Abrahams has directed some of Hollywood's most popular
comedies. But he will tell you his filmmaking career is not his greatest
success. He is prouder by far of the role he played helping his son overcome
a devastating disease. What this devoted father discovered transformed not
only his son's life, but the lives of thousands of other children, as well.
It's a story as dramatic as any movie, and one in which "Dateline" played a
part. NBC's John Larson reports.

JIM ABRAHAMS made some of the most successful film comedies of the
1980s, including movies like "Airplane," "Naked Gun," and "Hot Shots." But
the fun stopped for Jim Abrahams nine years ago. He was finishing his latest
movie when suddenly his one-year-old son, Charlie, began having unexplained
seizures.
"On his first birthday," says Jim. "I was pushing him in a swing on
in the front yard and I noticed his head kind of went like that, and he
threw his arm up in the air."
Jim and his wife Nancy took Charlie to a neurologist who did a series
of tests on Charlie's brain. The tests confirmed the doctor's suspicion.
Little Charlie had epilepsy. But nothing prepared the Abrahams of the
nightmare to come. Charlie began having many more seizures. Sometimes he'd
have 100 seizures a day. Sometimes Charlie would just go limp, other times
he'd shake, the worst kind of seizure.
The Abrahams brought Charlie to Dr. Donald Shields a nationally
recognized expert at UCLA who tried to control Charlie's seizures with
anti-convulsant drugs.
"And then we lost control," says Dr. Shields. "Nothing was working
and I think he probably had all of the available medications and we were
starting to look at some of the more experimental kinds of medications."

Resources on epilepsy and ketogenic diet


. Charlie Foundation Web Site
The Foundation's role is to facilitate investigation, educate professionals,
and inform families about the current status of the ketogenic diet.
.. Epilepsy and Brain Mapping Program Web site
EBMP is a comprehensive healthcare center for treating adult and pediatric
epilepsy and other neurological disorders with seizures.
.. Johns Hopkins Medicine Web site
Johns Hopkins contact: Diana Pillas 410-955-9100


Even worse, Jim Abrahams says, the drugs had a terrible side effect.
They were turning his son into a zombie.
"You pour the drugs down the child's throat, your child's throat,
despite the fact there is something inside you that says wait a minute, this
can't be right," says Jim "Charlie was so loaded at times, he lived in a car
seat. He was so blotto from these drugs that he was essentially
nonfunctional."
Consider this: new miracle drugs control these terrible seizures in
most of the three quarters of a million children in this country who suffer
from epilepsy. But for 150,000 kids, drugs simply don't work.
The Abrahams feared Charlie was one of these most unfortunate
children.
"After the first drug, there is only a 10 to 15 percent chance that
the second drug will work, regardless of what that drug is," says Jim. "And
the percentages drop from there."
Even more frightening, if left unchecked, these seizures can damage
their brains, retarding these children forever. So the Abrahams were racing
against the clock. They had to stop Charlie's seizures before it was too
late. They allowed doctors to operate on Charlie's brain, but the seizures
continued. They even tried a faith healer but that didn't work either.
"This house was filled with tears," says Jim. "All of us, all the
time, cried. Charlie's' brother and sister literally for months cried
themselves to sleep at the foot of his crib because they had some sort of
instinct that they that they wanted to be near him. "
His son was slipping away. His whole family was in anguish and the
doctors had no answers. Jim Abrahams was desperate. He decided to start his
own study of epilepsy. He attended medical lectures and read every book he
could find on epilepsy treatment. And one day in a medical library he found
something no one had told him about: a book describing a diet that
supposedly cured half of the epileptic kids who went on it.
"And it was dumbfounding," says Jim. "How could that possibly be?"
The book claimed that experts in Baltimore were perfecting something
called the ketogenic diet, a diet consisting largely of something most
doctors tell us to avoid: generous helpings of fat.
Against his own doctor's advice, Jim brought Charlie to Johns Hopkins
Children's Center where he found the man who wrote the book, Dr. John
Freeman. At Johns Hopkins, Jim and Charlie also met a 72-year-old dietician,
Milicent Kelly, who had been working with the diet for 40 years.
Now retired and a part time consultant, Milly had designed meals that
gave kids just enough protein to grow on, combined with lots of fat, bacon,
butter and heavy whipping cream. The families have to measure every bite of
every meal precisely or else, Milly says, the diet won't work.
"Whatever happens there to cause the seizure just doesn't happen
anymore and they become seizure free," she says. "That's a remarkable
thing. "
Finally it was Charlie's turn to try Milly's diet. He was taken off
all medications and fed mostly fats. His father says it was a miracle.
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"His seizures started to diminish almost immediately," says Jim.
"You could hold him and you could feel them be less intense. And within a
couple of days, he stopped having seizures completely."
"Sometimes there is truth in the old ways even if we don't understand
them," says Dr. Freeman, who supervises the ketogenic diet at Johns Hopkins.
"We have no clue how it works, and that is part of the reason it hasn't been
accepted in lot of places."
But consider the results. Most kids who try the diet at Hopkins can
go back to normal food after two years, never need drugs again and remain
seizure free.
Jim and Charlie returned to Los Angles, where Charlie thrived. No
longer a zombie on medications, the seizures were gone. But the story doesn'
t end there.
"All of the sudden your eyes open up in the middle of the night and
you say, wait a minute, you know, this didn't have to happen," says Jim.
"Ninety percent of these seizures didn't have to occur. Waking up around the
clock and pouring drugs down his throat didn't have to occur."
Jim was angry and puzzled that none of the six doctors he went to for
help ever mentioned the diet.
"What has stopped Charlie's seizures has been in existence for 70
years. It's been sitting there. It was waiting for him."
Larson: "You had some knowledge that this diet was probably working
at Johns Hopkins and yet you dissuaded Abraham's from attempting it. How
come?"
Dr. Shields: "Well because I don't think we had exhausted all of the
medical approaches yet. There were actually still other medications that we
hadn't tried yet."
Larson: "Dr. Freeman tells us that 50 to 70 percent of patients that
come through his doors and get put on the diet have success. can you think
of any drugs in these hard cases that have 50 to 70 percent success rate?"
Dr. Shields: "Probably not that comes up to that level."
So why are modern doctors ignoring this diet? Charlie's own doctor
has a surprising answer.
Dr. Shields: "There is no big drug company behind ketogenic diet and
there probably can never be unless somebody starts marketing sausage and
eggs with with cream sauce on it as a drug."
Larson: "You are saying in a sense one of the reasons the ketogenic
diet is not popular at this point is because there is not a big drug company
behind it selling it to the doctors?"
Dr. Shields: "I think that's probably true. I hate to say that, but
it's probably true."
"It doesn't not come a pill form," says Jim. "It cannot be
administered with a scalpel. And the only people who profit from the
ketogenic diet are the patients. "
When we left the the Abrahams family in 1994 Charlie was two and half
years old and the seizures had stopped. But as Jim would soon find out,
Charlie's life, as well as his own, were about to change forever.


TRANSITION OFF THE DIET
It had been two years of the so-called "eggs and bacon" diet and
Charlie Abrahams was feeling great. His parents, Jim and Nancy couldn't have
been more pleased.
"Our experience with the diet was that he was seizure-free and
drug-free, and his EEG, which had been a mess, cleared up," says Jim. "And
he was healthy."

Under the plan, most children go off the diet after two years to
see if they have outgrown the disease. So in 1996, when he was
four-years-old, it was Charlie's turn.
"The lore back then was that, if a kid has done as well on the diet
as Charlie, that you can wean him off the diet, and he'll be fine," says
Jim. "But that wasn't our experience. We took Charlie off the diet and his
seizures came back. As heavily, as profoundly, as destructively."
In that same year, one seizure was so bad Jim and Nancy rushed
Charlie to the emergency room, fearing it would cause brain damage. After
all they'd been through, the Abrahams were back to square one.
"So we called Dr. Freeman at Hopkins," says Jim. "That was a
refresher course we weren't interested in taking."
Dr. Freeman had three suggestions: do nothing, put Charlie on drugs
or put him back on the diet. Going back on the strenuous diet meant endless
hours of meal preparation for the Abrahams. Every bite had to be measured
down to the gram. The right balance of high fat, high protein had to be
exact. But for Jim and Nancy, the decision was easy.
"So we instantly put him back on the diet," says Jim. "A day later,
his seizures were gone. Once again, as dramatically, his seizures were gone.
He was just fine."
The Abrahams would try to take Charlie completely off the diet again
two years later, but before we tell you more about what happened, you should
know that as much as the diet was changing Charlie's life, it was
transforming Jim's as well.
Jim says the original broadcast of Charlie's story was like the
breaking of a dam. Tens of thousands of e-mails and letters from families
with epileptic children flooded his office.
"And one of the letters that we got, from somebody who was on the
diet and saw 'Dateline' that night, was this true story about another family
who had found the diet, and had to go through extraordinary circumstances in
order to get their kid on the diet."
Jim contacted the family. The mother shared their story, and what
happened next could only happen in
Hollywood.
In 1997, Jim told their story in a made for television movie: "First
Do No Harm." Once again, the diet was on the national stage,
reaching families whose doctors had failed to tell them about it.
Families like Jim and Jennifer Southern of Palmdale, Calif. All four
of their children suffer from epileptic seizures. After seeing Jim's movie,
they first put their eldest son on the diet.
"We went from 30 a day to none almost," says Jennifer Southern.
"The seizures were shrinking. I mean it was unbelievable," says Jim
Southern. "We were like, oh my God! We were really happy. We were also
saying, you know, we could have done this a long time ago. We couldn't have
been going through years of drugging him and drugging him."
They put their other three children on the diet as well. Again it
worked. All three were seizure-free.
"Was really like mad when I found out about the diet." says Jim
Southern. "It was like no one even came and said, okay you can take this
medication but there's also this diet. So we could sit down and make the
decision."

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But that is changing as increasing numbers of doctors now no longer
consider the diet alternative therapy but an accepted form of treatment.
Even Charlie's first physician, Dr. Shields, is a convert. One recent study
supports what the diet creators had known, suggesting the diet is 50 to 70
percent effective in reducing seizures in pediatric epilepsy where drugs no
longer work. That may be why Jim Abraham the Hollywood movie director has
written a new script not for some movie, but for his own life. He no longer
directs Hollywood blockbuster comedies. He has chosen instead to dedicate
himself to spreading the word of a diet.
"I don't want to ever minimize how much fun it is to sit in the an
audience and hear the laughter, when you've made a comedy movie, and you
know, you remember the day we thought of the joke," says Jim. "And you
remember refining it and filming it and now you can sit in the audience
anonymously and hear the laughter and that's wonderful. But to pick up the
telephone, and be able to talk with someone who says, 'I got my kid back.
And you were helpful in that.' You know, there's nothing quite like it."
So Jim Abraham is still in the business of making people smile.
"Yeah, oh boy. Yeah that's true," says Jim "You know, that's a much
broader smile, you know, that's that's certainly a longer lasting smile than
'please, don't call me Shirley.'"
Jim now lobbies Washington for epilepsy research dollars and he runs
seminars nationwide for families and doctors. Diet pioneer Dr. Freeman has
joined Jim on the lecture circuit.
But back in 1998, when Charlie was six-years-old, the Abrahams were
still trying to wean their son off the diet. And again, Charlie's disastrous
seizures returned. So the family tried one last time when Charlie turned
seven, and this time, it worked.
Charlie has been seizure free ever since and he can now eat virtually
anything he wants to, just like other kids. Charlie is now an active
10-year-old in fourth grade. And on this day, performing at his second piano
recital. The song? "a gift to be simple."
Larson: "What was that like? To listen to that, and to think about
what he's been through and how this has played out?"
Jim Abrahams: "It's a long time, but it's still..."
Larson: "You haven't changed that much in eight years."
Jim Abrahams: "Charlie has an older brother and older sister who have
no medical problems. And we took very much for granted each stage of their
development. With Charlie, each new step is a miracle. And to watch him play
piano and smile and perform the way he does, to us, that's another miracle."