Food for thought
Andrew Wainer
This was no normal cookies and milk after-school snack.
A small pile of chopped lettuce leaves, a half a pecan and a water
Popsicle were all 5-year-old Madison Moore was allowed to eat upon
arriving at her Huntington Beach home.
Madison’s mother Janna, who meticulously weighed her daughter’s food
intake, made sure her daughter ate the meager afternoon snack.
Although lettuce and water would not fill most youngsters’ ravenous
afternoon appetites, this Spartan snack was the only way to control
Madison’s epileptic seizures, which had totally debilitated her until she
started the diet.
Madison was diagnosed with epilepsy just after her third birthday. Her
descent into an emotional and developmental pit went virtually unchecked
until Janna found out about the Ketogenic Diet.
“She would have up to 100 seizures a day,” Moore said inside her pleasant
suburban house. “She would stop what she was doing and stare to the
side.”
Madison was afflicted with staring seizures, in which the victim stares
into space, losing concentration and awareness.
Although she was not subject to the more violent shaking epileptic
seizures, the effects were equally devastating.
“At first I just thought she was distracted or falling asleep” during her
seizures, Moore said.
But in spite of the relative subtlety of Madison’s attacks, they had a
devastating affect on her development.
After consulting physicians, the Moores put Madison on anti-seizure
medications, but she continued to deteriorate.
“The medication put her in a catatonic state,” Moore said. “She was
reduced to saying one word at a time.”
Madison was put on five different medications over a 14-month period.
Although the medicine brought her seizures down to between 20 and 40 a
day, they still wreaked havoc with her life.
“We were living to prevent her seizures,” Moore said. “The slightest
provocation would set her off.”
Moore said a slamming door, a correction from her teacher or simply a
louder than average voice would bring on a seizure.
The Moores were desperate.
They began attending an epileptic support group.
Some of the kids in the support group talked about a diet they were on
that suppressed their seizures, when medicines had failed.
“Our family was at the bottom of a downward spiral,” Moore said. “We were
in total denial that our daughter was not going to get better.”
Seeing Madison’s condition -- at this point she had forgotten how to
count and couldn’t identify colors -- support group members recommended
the Ketogenic Diet.
With their anguish growing, the Moores enrolled Madison in the Epilepsy
and Brain Mapping Program at Huntington Hospital in Pasadena.
After being evaluated by pediatric neurologist Roger Huf, Madison was
deemed eligible for the diet.
Although the diet shows positive results for about two-thirds of patients
who try it, it is still a mystery, even to doctors.
Patients must follow a high-fat, low-calorie diet that replicates
starvation.
When the brain perceives that the body is being starved, it produces
ketone bodies in the blood and urine. This type of fat metabolism
produces the ketosis that promotes seizure control.
To begin the treatment, patients are hospitalized for three days, where
they begin a fast that completely changes their body’s metabolism.
Huf, who monitors the patients during this delicate time, was introduced
to the treatment while a medical intern on the East Coast.
He said ketogenic treatment has been used since at least the age of the
ancient Greeks when patients were urged to continually vomit, starving
themselves and putting them in a state of ketosis.
The ketogenic diet was popular up to the mid-1970s. Then, with the
growing use of medications in the late 1970s and early 80s, the diet was
almost relegated to folk medicine.
But the medications did not work for everyone.
Huf said about 10% of patients do not respond to drug treatment for
epilepsy.
That is where the Brain Mapping Center comes in.
Huf has been working with the diet for almost five years, first in Los
Angeles and then in Pasadena.
He has treated more than 80 patients with the ketogenic diet in those
five years. He says the results have been very positive.
“We get patients from around the world who come to us for help,” Huf
said.
He described Madison as one of his “star” patients.
But commencing the diet and treatment was no piece of cake.
Upon beginning the diet, Madison was closely monitored by doctors to
ensure that her blood sugar did not fall too low.
This fast puts the body in a state of ketosis where it begins to burn
fats rather than carbohydrates. This is the same state the body is in
while it is being starved.
This process also changes the brain chemistry that helps suppress and
control seizures.
The effects of the treatment on Madison were stellar.
Within three days the number of seizures she was having went down by 75%.
Slowly, Madison was able to be weaned off her medication.
After her body was put in the initial state of ketosis, Madison had to
follow a stringent diet that would continue to fool her brain into
thinking she was in starvation mode.
Madison’s 980 calorie per day diet is 90% fat, which continues to trick
the brain into thinking it is burning its body fat because it is
starving.
It is also 25% less than an average kid her age consumes, leaving her
often craving more food.
“She sometimes refuses to go to events where food will be served because
it makes her feel bad that she can’t eat,” Moore said.
A birthday party, a movie or an amusement park take on an entirely
different meaning when you cannot eat what you please, Moore said.
Nevertheless, the benefits of the diet, almost complete regression of
seizures and Madison’s improving development, far outweigh the labor of
constant vigilance over her eating habits.
“The diet has been incredible,” Moore said. “She is learning and she is
much happier.”
Madison is also starting to act like a happy, well-adjusted girl.
Her bright blue eyes exude an optimism and energy that her mother says
was nonexistent when Madison was suffering from constant seizures.
Although Madison is still behind her peers educationally, she is catching
up, bolstered by her mother’s emphasis on home education.
But Moore remains cautious.
“Hopefully she will only have to stay on the diet for two years,” she
said. “But in the meantime she cannot cheat because it really affects her
mood.”
As Madison playfully teased her family’s giant German Shepherd, her
restraints weren’t apparent. But straying from the narrow confines of the
Ketogenic diet has serious consequences.
Moore said her daughter gets “angry and disoriented” when she cheats on
her diet and eats more than she should.
If Madison consumes even a fraction more of what she should, her body is
taken out of ketosis and the seizures begin again.
Watching her daughter laugh and grow is what keeps the Moores going.
The diet is not easy.
Madison must eat about every two hours, which means that Janna has to get
up in the middle of the night to give her a meal.
But watching Madison enjoy life like a normal child has filled the Moores
with new hope.
They want to spread this hope to other families who might not know about
the Ketogenic diet.
“I can’t say enough about how this diet has helped us,” Moore said. “I’ll
do anything to help other children overcome their epileptic seizures.”
Madison’s diet plan
The diet includes three meals a day plus two snacks.
Meal No. 1
35 grams of heavy whipping cream
16.5 grams butter
18.5 grams meat, fish, or poultry
11 grams fruit
115 cc water
Meal No. 2
5 grams macadamia nuts
16.5 grams cheddar cheese
20 grams heavy whipping cream
16.5 grams butter
6 grams fruit
120 cc water
Meal No. 3
15 grams Best Foods mayonnaise
28 grams beef frank, Oscar Meyer
5 grams cheddar cheese
20 grams heavy whipping cream
9 grams vegetable
120 cc water
Snack
26 grams celery
20 grams Bob’s Big Boy blue cheese dressing
140 cc water
For further information call the Epilepsy Foundation at (800)564-0445.
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