Raising a child with epilepsy is especially challenging for parents. Susan Noble works closely with Golisano Children’s Hospital, helping families get the resources they need.
“Your child is put on a lot of medications; sometimes you have to try ten different maybe even 30 to 40 different medications before you find the one that is going to work for you. But there’s also no guarantee,” says Susan Noble, with Epilepsy Warriors.
Controlling brain seizures is puzzling for doctors too. Some children outgrow them.
“If we are able to get the seizures under control, which we are in about 2/3 of the patients, we look forward to the future 2 to 3 years. If in 2 to 3 years there have been no further seizures and the EEG - the electroencephalogram - is normal, there’s about a 70% chance of coming off seizure medicine,” says Dr. Guillermo Philipps, pediatric neurologist with Golisano Children’s Hospital of Southwest Florida.
The difficult cases of epilepsy, ones where medications failed, forced doctors to look further. Since the 1920s, major research institutes have used diet to deal with pediatric epilepsy, but more recently the ketogenic diet was recognized for serving up results.
“The ketogenic diet has been around for decades. It is a special diet where there’s a high fat/protein- low/ carbohydrate ratio that produces what’s called ketosis. Instead of circulating glucose through the blood, you circulate ketone bodies and these are anti-epileptic,” says Dr. Philipps.
The ketogenic diet drew skepticism because it turns the food pyramid upside down. Ninety percent of the calories are fat, 7% are protein, and 3% are carbohydrate. Many studies find it sharply reduces or eliminates seizures - in particular in kids.
“The ketogenic diet can be used as early as infancy,” says Dr. Philipps.
It takes a great deal of control and must be medically supervised to ensure a child gets proper vitamins and minerals not obtained through food.
“This diet has been very effective; it can reduce seizures greatly. But it can be very difficult to maintain,” says Dr. Philipps.
Based on its results, the ketogenic diet may be worth the trouble.