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.