Ketogenic diet requires parent education
Ketogenic diet requires parent education
Children’s hospital admits patients for education
The "ketogenic" diet is gaining popularity for treating epilepsy in children. Initially studied in the 1920s as a treatment for intractable epilepsy, there is now a resurgence of interest in the high-fat, low-carbohydrate diet. Experts on the diet say that some epileptic children can be helped by it, but that compliance with the diet may be difficult, especially if parents aren’t 100% behind it.
The ketogenic diet is so named because it produces ketosis. It is high in fat, low in carbohydrates and protein, and limited in fluid. The ketotic state helps produce an antiepileptic effect, although the exact mechanism of action is not fully understood, says Jin Hahn, MD, chief of pediatric neurology at the Packard Children’s Hospital, part of Stanford (CA) University. (See diet rules, p. 38.)
"Nobody really knows how ketosis affects epilepsy," he notes. "We know that as a result of burning fat, the body produces ketone bodies instead of a metabolite that is generated by the breakdown of glucose. So these ketone bodies seem to be very important because that’s what you get when you starve or are on a fat-only diet. These may have some specific effects by changing the metabolism of the neurons. There’s less excitability in the nerve cells because they have to use these ketone bodies as their energy source. The brain can use either glucose or ketone bodies. We’re just switching them to using primarily ketone bodies as their fuel source."
John M. Freeman, MD, Lederer professor of pediatric epilepsy at Johns Hopkins University in Baltimore, is a leading authority on the ketogenic diet.1 He says at the turn of the century until the 1930s, some epileptics used fasting or variations of the ketogenic diet along with prayer to help their condition.
"Then people discovered the medicines, and people forgot how to do the diet," Freeman says. "The diet was [recently] rediscovered."
He says that roughly 20% to 30% of epileptics aren’t helped by the diet, but in 70% "it gives you better control than any of the current medicine." For 25% of patients, there is a 90% control rate, "which is better than any of the medicines."
The diet can replace medication in some children whose seizures are controlled by the diet, or it can reduce the amount of medication patients must take, Hahn adds.
"There is a small minority who get complete control," he says. "Most of them get some benefit, that is more than a 50% reduction in seizures. But there is about a third who don’t respond well [to the diet]."
At Packard, about 30 to 40 children are on the ketogenic diet, which has as its mainstay foods such as butter, mayonnaise, and heavy cream.
"Compliance is always a big issue," Hahn says. "Everything the patient eats has to be so exact. If the patient eats something high in carbohydrates, it can alter the metabolism and their ketotic state. Therefore, we instruct the parents to be very careful and measure out foods very exactly."
In a study from The Johns Hopkins Medical Institutions, investigators reviewed the records of 68 patients in 1994 and 1995 who were on the ketogenic diet for refractory epilepsy.2 They analyzed the reasons for discontinuation of the diet within the first year it was used. Forty percent (28) discontinued the diet prematurely before 12 months, and the mean number of days on the diet was 64, with a range of 26 to 363 days. Fifty-seven percent (16) patients discontinued the diet due to inadequate seizure control, and 18% (five) experienced adverse effects or illness, as follows:
• chronic constipation (three);
• recurrent vomiting (three);
• esophagitis (three);
• behavioral problems (one);
• recurrent infections (one).
Twenty-one percent (six) patients felt that dietary restrictions outweighed the benefits in terms of seizure control or medication reduction. However, for the diet to be continued long-term, factors such as parental education and support were necessary, the researchers note. Long-term adherence to the diet was due to two factors:
• Patients had success controlling seizures.
• Parents perceived their children’s quality of life had improved.
"We have to play around with the kids’ menus to help make the diet more interesting," says Hahn.
For example, he says there is an "eggnog" shake made with eggs and artificial sweeteners that many children find palatable.
Compliance is more of a problem in older children who may have difficulty staying away from forbidden foods or excess fluids when in school.
"But parents instruct teachers that the kids are on a special diet, and it usually works out well," Hahn adds.
In the Johns Hopkins study, factors that helped increase compliance with the diet were identifying parental expectations and misconceptions before the diet was initiated, educating parents about adverse effects of the diet such as constipation, and establishing parental support networks at the hospital.
"If parents expect that their kids will be able to eat whatever they want, they can’t," says Freeman. "If parents expect that their children will be seizure-free the day after they start on the diet, they’re wrong. If their expectations are out of line with reality, they’ll be disappointed, and they won’t stick with the diet."
He says another issue is cultural influences of families. "If they want a kosher diet, you have to give them a kosher diet," Freeman says. "This diet isn’t for everybody," he adds. "It hasn’t been tested in adults; it’s difficult for adolescents. But for patients who have difficulty controlling seizures, it’s better than any of the current medications."
At Packard, Hahn says patients first placed on the ketogenic diet are admitted to the hospital for five days to receive intensive education about the diet and to be evaluated on how they respond to the diet. Parents and children receive instruction on meal plans, checking urine for ketones, and checking blood for hypoglycemia. To obtain a copy of the protocol used at Packard via the Internet, contact: http://www.leland. stanford.edu/group/ketodiet/index/html.
References
1. Freeman JM, Kelly MT, Freeman JB. The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet. New York City: Demos Publications; 1994.
2. Casey JC, Kelly MC, Hirsch HS, et al. The ketogenic diet: The long haul. Abstract #1.40. Presented at the American Epilepsy Society Annual Meeting. San Francisco; December 1996.
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