| Keto Stories —Carson, Katie, Charlie | ||
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| Tell us your story! E-mail MyKetoCal@Nutricia.com and share your ketogenic story with us. | ||
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Carson's Story In January of 2007, we took our 5-month old daughter, Carson, to Johns Hopkins Hospital because she was having what appeared to be seizures. Twelve hours, a spinal tap and an EEG scan of her brain later we were told that she has a rare form of Epilepsy called "Infantile Spasms". There are no words to describe the emotions we experienced upon hearing the news that our daughter had about a 20% chance of recovering. Fortunately for us, Johns Hopkins has one of the best pediatric epilepsy programs in the country so we were immediately seen by specialists who have hands on experience with this rare disorder. We were offered multiple forms of treatment, including a regiment of steroids called ACTH, Vigabatrin, Topamax and a more radical approach that Hopkins happens to specialize in called the ketogenic diet. Since Carson's Mom, Gerry, was perceptive enough to have caught the subtle changes in her behavior in the first week, the doctors told us that we not only had the option of trying the diet before the drugs, but that it also had a better chance of working. If her condition had gone untreated for a few more weeks (as many do) we would have had to move straight into the medication but then we would have also had to simply deal with the lasting side effects that the drugs can cause. Carson was admitted to the hospital on a Saturday; she began fasting on Sunday and had her last seizure on Tuesday night. Carson came home from the hospital on Friday of that same week and continued the diet for 8 months. After her 1st month on the diet, the EEG scan of her brain had almost completely normalized other than some slowing in the left temporal lobe. After her 2nd month on the diet, her EEG was perfectly clear. We are overjoyed to report that Carson is now developing normally and continues to be seizure free. -- More information at www.carsonharrisfoundation.org |
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 Katie pictured above |
Katie's Story “Katie was not born with a seizure disorder. She acquired one,” says Melrose, Katie’s mother. In January 2005, Katie, an honor student and elite athlete, came home from swim practice with a headache. Within 24 hours, she developed a 104.5 degree fever. After the fever subsided, Katie insisted on going back to school, which is where her first grand mal seizure occurred. She was rushed to the hospital and diagnosed with viral encephalitis as her brain began to swell. The doctors called Katie’s situation “very grave” and weren’t sure she would even make it through the night. To control the seizures, she was put into a medically induced coma. Several attempts to bring her “up” failed. After 35 days, the doctor made a medication change that stopped Katie’s brain from seizing, finally allowing her to come out of her coma. Six weeks later, her seizures began again. Over the next year and a half, Katie was on seven different anti-seizure medications. But she was still suffering from nearly 50 seizures a month. “We knew we were dealing with a very difficult situation, and we were told that there would only be a 5% chance that any other medication would be effective in controlling Katie’s seizures,” says her mother. That is when Katie and her parents began researching the ketogenic diet. Impressed with the initial studies, they took Katie to the Epilepsy Unit at the Children’s Medical Center at the Medical College of Georgia. At 19, Katie was the center’s first ketogenic patient. The diet soon began to work. Katie’s monthly seizure count went from 6-12 a month to 1-3 a month. Recently, the family discovered KetoCal, which has provided Katie with more food options, including blueberry muffins and pancakes. “Just those two foods make a world of difference to her,” says Katie’s mom. Using the ketogenic diet has dramatically reduced Katie’s seizures. Though certainly not the easiest diet for a busy 19-year-old, she makes it work. And the results are definitely worth her effort – she has gone from 50 seizures a month to less than three a month. Katie’s life has changed dramatically in the last year and a half. She is not away at college on a swimming scholarship like she had anticipated. But she has a full, rewarding life, thanks to the ketogenic diet. She takes classes at her local college. And she is back in the pool, working with children with disabilities in the Adapted Aquatics Program at her neighborhood YMCA. Although her life is not what she expected, Katie’s mother says, “she is most determined to continue to live her life and accomplish her goals, and we have no doubt that she will.” |
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 Charlie pictured above |
Charlie's Story "On March 11, 1993, I was pushing my son, Charlie in a swing when his head twitched and he threw his right arm in the air. The whole event was so subtle that I didn't even think to mention it to Nancy, my wife, until, a couple days later when it recurred. She said she had seen a similar incident. That was the beginning of an agony I am without words to describe. - Jim Abrahams, Charlie's Dad; www.charliefoundation.org |
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