'Last-resort' diet working wonders for 3-year-old

Niagara County girl treated for seizures at Children's Hospital at Strong

October 22, 1999

Debbie and Lee Smith were at their wit's end, so they didn't hesitate to act this summer when doctors at Children's Hospital at Strong suggested they rid their kitchen of many of their favorite foods.

Their daughter, Jenna, was suffering from up to 100 seizures each day, often from the time she woke up until the time she went to bed. The symptoms were frightening. Sometimes her arms would tremble, or her eyes would roll to the back of her head.

After being examined at Buffalo Children's Hospital, the Smiths brought their daughter to Rochester, where they received a second opinion and a dose of hope.

Jenna was examined at the Strong Epilepsy Center, which is affiliated with Children's Hospital at Strong. She was placed on the Ketogenic diet - a high-fat diet that significantly restricts carbohydrates - an unorthodox move that has given the girl a new lease on life.

"We have about 20 patients on the diet right now," says Giuseppe Erba, M.D., Jenna's doctor. "It's working very well for this girl. We have to educate the families because this means revolutionizing the way people cook and keeping a close eye on the refrigerator. These kids can't even have an extra candy."

Debbie Smith says the diet was a "last resort." She doesn't mind that her family had to cut back on high-carbohydrate foods like potato chips and cookies.

"So far, this has been really life-changing for my little girl," Smith says. "She's starting to talk, and she's learning for the first time in a long time. Other doctors had pretty much given up on her, but this diet has turned my daughter's life around."

Jenna experienced her first seizure just after her first birthday. Her parents, who live in Newfane, Niagara County, were told that the seizures were so severe their young daughter might die. At one point, the girl was treated with a combination of three drugs, causing her mother to remark that she was like "a walking zombie."

"The Ketogenic diet was never mentioned as an option, until Jenna was treated at Children's Hospital at Strong," Debbie Smith says. "After two long, heart-breaking years, we have hope. Once Jenna started having seizures, her life - and the lives of her family members - were put on hold. Now, if you could just see the difference in her."

Note: In August, Jenna Smith's uncle, Steve Salmeri, of Lockport, ran and bicycled 68 miles to raise money for Children's Hospital at Strong. Salmeri will raise more money on Oct. 24, when he runs in the Casino Niagara International Marathon. Also, Jenna and her family will be visiting Children's Hospital at Strong for a check-up on Monday.

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