Mar 07, 2017
200 seizures a day to zero
Low-carb diets have been in and out of the news for years as a way to lose weight, but in the case of 6-year-old Chloe Busch, this unique type of diet helped her reduce seizures from up to 200 a day to zero.
Born as a twin, Chloe’s mother Michelle realized something was wrong shortly after Chloe was born.
“Chloe simply wasn’t doing the things like her twin Katie was doing,” Michelle explains. “She wouldn’t make eye contact, follow objects with her eyes, and she wasn’t rolling or pushing herself up.”
Chloe’s pediatrician at Wright-Patterson Air Force Base referred her to Dayton Children’s neurology department for further testing. Gogi Kumar, MD, medical director of neurology, ordered a microarray test, a test used to determine genetic problems.
“In Chloe’s case, the tests showed us she is missing three genes on her fifth chromosome,” Dr. Kumar explains.
When Chloe turned a year old, she started to develop a gaze that Michelle describes as ‘startled jerks.’
Chloe was diagnosed with the deletion in the summer of 2009, and two days before Christmas that year, news went from bad to worse. “She had an EEG a few months later that indicated the startled gazes were in fact epileptic seizures,” shares Michelle.
“Not only that, she was having up to 200 a day. The seizures were clustered together and were the worst when she woke up. She would have 60 plus seizures before getting out of bed.”
trying to calm Chloe’s brain
To control the seizures, Chloe was put on medication. “Some of the side effects of the medication were appetite suppression and at one point, she stopped eating, which was utterly terrifying,” Michelle explained. “She made no eye contact, she never laughed; we were desperately trying to search for the key to unlock the mystery of my daughter.”
After trying several different seizures medications, Dr. Kumar recommended something called the ketogenic diet.
“The ketogenic diet works very well for some patients where medication hasn’t eliminated seizures; the catch is that it's extremely demanding and difficult to follow and requires 100 percent commitment from the parents,” says Dr. Kumar.
As a medically-supervised diet, Chloe’s registered dietitian at Dayton Children’s also attends every appointment with Chloe to ensure she’s growing properly and her seizures are under control on the diet.
hard to swallow diet equals incredible results
“The classic ketogenic diet is a high-fat, low-carbohydrate, adequate protein diet that can be used to treat difficult-to-control seizures,” describes Alison Ruffin, RD, LD, registered dietitian at Dayton Children’s.
The ketogenic diet is stricter than the modified Atkins diet, requiring careful measurements of calories, fluids and proteins. According to Alison, the typical ketogenic diet provides three to four grams of fat for every one gram of carbohydrate and protein.
“The ketogenic diet can be adjusted just like medication,” she shares. “Chloe’s current diet is a 3:1 ratio, which means she eats three grams of fat for every one gram of protein and carbohydrate. The hardest part of the diet is it’s so precise, cheating - sneaking the crumbs of a cookie - can result in a seizure.”
However, precision paid off for Chloe. “It was incredible, within days of starting the diet I started to notice less seizures,” Michelle says. “It was like she was slowly coming out of her fog. We started to slowly wean her off of the medication and within two months, she went down from 200 seizures a day to 50. We were ecstatic.”
According to Dr. Kumar, “Approximately one-third of children who follow ketogenic diet therapy have greater than 90 percent seizure reduction. Another third of children have at least 50 percent seizure reduction with ketogenic diet therapy, and some children may experience less intense seizures.
Chloe’s ratio now seems to be the perfect combination and her seizures are so well controlled that she hasn’t had a seizure in more than two years without medication.”
living in a precise world
“Measurement is king for kids like Chloe – every single gram of carbohydrate is measured,” says Michelle. “We work very closely with Alison to measure everything down to the last gram. If we’re off by even one-tenth of a gram, it can lead to a seizure.”
Alison’s role is to create recipes that are just the right ketogenic ratio that also taste great.
“I like to incorporate foods that the child already enjoys and to help families come up with fun ways to celebrate special occasions with ‘keto-friendly’ treats so the child can participate,” shares Alison.
For the Busch family, the ketogenic diet is simply their new normal. “I use a digital food scale to measure everything; I use the ketocalculator and work closely with Dr. Kumar and Alison to ensure we’re taking all of the right steps to prevent her from having seizures. Chloe hasn’t had a seizure in more than two years since starting the diet.”
Chloe has an EEG every year and meets with both Dr. Kumar and Alison every three months to ensure she’s growing properly on the ketogenic diet. “Chloe’s family has played a tremendous role in her success on the diet. Her parents are very cautious and creative about her meals,” explains Alison.
In addition to success on the ketogenic diet, Chloe also receives weekly physical therapy. She’s made significant developmental milestones, including walking with the assistance of a walker.
“With less than 50 children known worldwide who have the same deletion as Chloe, it’s so difficult to know long term what her life will be like as an adult,” Michelle explains. “Deep down, I know she’s just a normal kid who wants to play and do what any other 6-year-old does. She’s determined; I can see that in her eyes. Being on the ketogenic diet was the key that unlocked the door to Chloe’s world.”
At Dayton Children’s, more than 30 children have been monitored on the ketogenic diet therapy program in the past two years.
What’s for dinner on a ketogenic diet?
Typical meals include a protein source, fruit or vegetable, fat (oil or butter) and heavy whipping cream. The diet also restricts high-carbohydrate foods such as candy, cookies, bread, potatoes, rice, cereals and pasta. All foods must be carefully prepared and weighed to the exact one-tenth of a gram. The diet consists of a ratio in grams of fat to non-fat (protein and carbohydrates) of 4:1 and 3:1.
- Scrambled eggs prepared with butter and heavy whipping cream served with a side of bacon and garnished with fresh tomato
- Cheese omelets prepared with eggs, butter, heavy whipping cream, cheddar cheese and green peppers
- Flaxseed porridge with apple and almond butter hot cereal
Lunch and dinner examples:
- Beef tenderloin, broccoli topped with butter and whipped heavy whipping cream
- Homemade creamy chicken soup prepared with chicken, chicken broth, carrots, celery, heavy whipping cream and vegetable oil
- Taco salad – Romaine lettuce topped with seasoned taco meat, shredded cheddar cheese, chopped tomato or salsa, sour cream and black olives with a side of heavy whipping cream