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.