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A Mother's Experience With the Ketogenic Diet
Three and a half year old Jeffrey Bolle and his family used to battle with 10-12 seizures a day until two years ago when he was put on the Ketogenic Diet. After a year and a half, his seizures decreased to an average of five or six a day. His mother Vicki is satisfied with the results but reaching this point was not easy.
Vicki and her husband William, Cape May, NJ residents, were never told about the diet from their son's neurologist at a hospital in Philadelphia and only heard about it from an aunt who sent them a transcript of a "Dateline" segment on the Ketogenic Diet. As soon as they learned about it, they wanted to put Jeffrey on the diet. At the time, Jeffrey, a year and a half old baby with TS, suffered from 10-12 intractable seizures a day. "He had tried four to five different drugs over the course of a year and a half, but nothing significant worked. Maybe one would work for a week or so, but it didn't stay with him," his mother recalls.
When the Bolles approached their son's neurologist, they did not receive much support despite having one of the most experienced nurses in the Ketogenic Diet on the hospital staff. Unwilling to lose a patient, however, he reluctantly introduced them to this nurse who had been working with Diet for almost 25 years. Jeffrey's parents later switched to another doctor in the same department who was more willing to work with them. "We had to ask about the diet. They never mentioned it was an option," Vicki says.
Jeffrey did very well on the diet for awhile after he started in February 1995. His seizures decreased by half, and some days he only had one or two. His mother served him "mushed foods" out of a choice of scrambled eggs, hotdog sausages, hamburger meat, or bacon all cooked with butter. He had to drink heavy whipping cream from his bottle every day, and he didn't take well to mayonnaise, but he accepted the food. "He didn't really have experience with solid food before this. He pretty much ate the same thing all the time because he couldn't really chew, and experimenting wasn't worth the effort," says his mother.
Jeffrey's family found it fairly easy to live with the diet. His parents and both grandmothers never found food weighing difficult, and food preparation only took a few minutes more than it took to scramble eggs. Traveling wasn't really a problem either. When the family drove down to South Carolina, they stopped at rest stop restaurants for scrambled eggs, and measured it with a scale they brought along. Their only concern was to make sure that Jeffrey's older brother Steven, who was three years old, never gave him anything extra to eat. Extra food could throw the diet off and they would have to start over again.
Inconveniences were minimal too. Vicki had to be careful of any products that were taken orally. For example, she bought Tom's Natural Toothpaste for Jeffrey in case he swallowed it. When he went to a pediatrician for an ear infection, she made sure that the doctor did not prescribe any drugs containing ingredients incompatible with the diet. The only other inconvenience was to re-arrange their beach outings so it didn't interfere with Jeffrey's midday meals.
However, one day Jeffrey stopped eating the food for no apparent reason and had to be taken off the diet. "What made us stop was he wouldn't eat scrambled eggs, his favorite, and wouldn't drink the whipping cream. I don't know why. It came between were we not going to feed this child at all or (were we going to take him off the diet).... His neurologist was probably relieved that we decided on our own because it was easier for him to work with medications. I think he was waiting for us to get it out of our system," says Vicki.
Luckily, Jeffrey's seizures have remained at five or six seizures a day. While he now eats normal food, Vicki still watches his sugar intake and tries to limit his food to three meals a day. He is also on an anti-epileptic drug that he took while on the diet (his doctor wanted to see if his seizures could be cut down further), but his mother doesn't think that it has ever worked for him.
Looking back Vicki Bolle is glad that she tried the Ketogenic Diet and says she would recommend it to other families. "It doesn't really cost anything. I don't agree with doctors who say the diet is unnatural because it's just food measured proportionately. I know it's not a miracle cure for everyone, but I don't think it hurts to try it. Many families don't even know it's a choice, and for some, it's a worthwhile choice, I'm sure."
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