Saturday, November 17, 2007

Can a Ketogenic diet keep boy seizure-free?

Doctors are increasingly turning to the foods we eat to help cure some childhood illnesses.

See how the family is adjusting

It's a story told through a five-year old Boise boy who follows a strict diet to help treat epilepsy, one of the most common neurological disorders afflicting children.

Miles Hoene-Langdon tried conventional medicine to stop his epileptic seizures but nothing worked.

So his family turned to something unconventional: an eating plan known as the ketogenic diet.
His doctor says it can help young patients overcome epilepsy.

Miles eats 100 grams of fat daily - that's equal to one stick of butter.

Most people are taking in about 33 grams of fat per day.

It’s a time consuming diet to follow but Miles' family was willing to do anything to bring their little boy back.

About two years ago Miles' parents noticed some days he would begin to stare then suddenly drop to the ground.

"We felt like we were losing him because he wasn't the same kid he had been," said Monica Hoene-Langdon.

Kim and Monica Hoene-Langdon knew something was not right - and were devastated when doctors delivered the diagnosis: Miles had epilepsy.

“It is devastating because all of sudden, he's very normal and you think everything is going fine and it got to the point where he couldn't play or have a conversation with us,” Kim said.

"He had some stretches that were pretty bad. Multiple seizures per day as I remember," said Dr. David Bettis with Pediatric Neurology of Idaho.

At first Bettis prescribed medication to stop the seizures. But after four different pills failed, he decided to turn away from modern medicine and try a diet that has been around for decades - The Ketogenic Diet.

“The ketogenic diet is about 80 to 90 percent fat which is Atkins gone wild really,” St. Luke’s Regional Medical Center dietician Stacy Beeson said.

The high in fat diet mimics the effects of starvation. Bettis says researchers have found fasting helps seizures.

"Obviously something had to be done to control the seizures and the ketogenic diet stepped into that and was really a homerun," Bettis said.

A home run Dr. Bettis says takes a team to achieve.

That team includes a doctor, dietician, a willing patient, a supportive twin sister and of course parents ready to learn some new, creative recipes.

"I can make waffles. I can't use grain but I have discovered that macadamia nuts make a good flower," said Kim Hoene-Langdon, Miles’ mom.

Kim always tries to make Miles' meal similar to the family's.

One evening, she made a special pizza for Miles with a crust made out of egg whites and Macadamia nut flour and a special kind of tomato sauce.

His typical beverage: whipping cream that's not whipped. Miles has not had milk for a year and a half.

For a side dish - a little bit of fruit.

"Kim and Monica have to weigh each item that Miles gets and they have to scrape all remaining contents," Stacy said.

"Sometimes a snack for him is one olive and a few leaves of lettuce and that gets him through the afternoon," said Monica said.

"I think one of the toughest things is when you have been at an activity and your coming home and your kids are both tired and hungry you can't just stop somewhere and get him a drink or a burger," Kim said.

The family acknowledges this is an odd eating plan, one that Miles follows well.

So far, this 5-year old is 14 months into the diet and seizure free - something his family is thankful for.

"He's going to have a much better, healthy normal life afterwards," Monica said.

"In well over 10 years of experience and close to 40 cases of the diet I have never had a patient who responded to the diet as well as he did," Bettis said.

"It gave us Miles back," Monica said.

Over the next few years miles will taper off the ketogenic diet.

Bettis says Miles has an excellent outlook for overcoming epilepsy.

A third of Bettis' patients at St. Luke's who try this diet have had a good response.
The program must be monitored by a doctor and a dietician.

Experts at St. Luke's Children's Hospital say diet therapy can positively affect a wide variety of health issues.

Nutritional supplements can help kids with cystic fibrosis and other gastrointestinal diseases.
Children with certain metabolic diseases such as phenylketonuria follow rigid eating plans to avoid progression of symptoms.

But doctors at St Luke's warn diets are not a blanket cure, and the outcomes vary from patient to patient.


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