LIVINGSTON, NJ — When 11-year-old Alexander Yucht experienced his first major seizure in 2010, his father knew Alex had inherited the childhood epilepsy that he suffered from for several years. Livingston father-of-two Scott Yucht, alongside two mothers in similar situations with their own kids, created a family-friendly support system called the Keto Kids Club that will hold its first annual event on Oct. 22 at the Livingston Ambulatory Care Center.
Scott and his co-founders Michelle Sanders and Renee Klein quickly discovered that there are additional and alternative treatment options for neurological disorders like epilepsy than expensive medications. Together they created the Keto Kids Club to support children and their families using a dietary treatment called the Ketogenic Diet, which in Yucht and Sanders’ cases improved the symptoms of the disorder and for Klein, this dietary plan is a way of life.
“This is a very difficult and isolating diet—you’re basically the little baby bird that gets pushed out of the nest and either you fly or you splat on the ground,” said Yucht. “We felt there was a tremendous need for a little cushion to break the fall.”
Even though the strict change in diet helped these families, Scott said there were no resources or support systems for families to be able to help each other through this difficult transition. According to Scott, the Keto Kids Club event in Livingston will create an environment for parents and kids to get to know and help each other.
Alex, whose story began when he was rushed to a hospital after passing out the parking lot of a supermarket, is one of many children who endured the overnight adjustment no-carb, no-sugar diet. In order to experience the dramatic and immediate effects of the Ketogenic Diet, epileptic kids like Alex wake up one morning to find that kid-friendly foods like pasta, cereal, bread, most fruits, ice cream and even many vegetables are suddenly eliminated from their daily intake.
On the other hand, kids like Alex also discover almost immediately that not only have their seizures lessened or disappeared, but that their memory has also improved, they are progressing in school, they have more energy during the day and that many other symptoms have subsided regardless of their medication. According to Scott, although the Ketogenic Diet is not successful for everyone, the effects dramatically improve the overall quality of many children’s lives. Scott finds it frustrating that there are other options than medication for many neurological diseases, but that some parents make excuses as to why they are unwilling to try.
“Not nearly enough people know about it or are trained properly to be able to do it and it’s overwhelming,” said Yucht. “People get very scared and overwhelmed and end up quitting the diet because they can’t do it and don’t know where to turn or when to get help. That’s where we came from.”
According to Scott, the Keto Kids Club event will feature a Kids Panel for kids to share their stories, presentations from three doctors, an author from Harvard University, well-known Ketogenic food vendors, cooking demonstrations and a cocktail reception.
Scott, speaking from his own experience with childhood epilepsy, saw improvements in his son and wished his parents had known about the dietary treatment when he was young. According to Scott, he has a very vivid memory of his life before medication and of life after medication, but many details during the seven years he was on medication are missing from his memory. Had Keto Kids Club existed the, Scott said things may have been drastically different.
“I think I would’ve had a lot more options and opportunities,” said Yucht. “It would’ve given me an opportunity to not have to look for medication because I have a lot of side effects now as an adult that are a result of the medication I took as a child—and I think that I wouldn’t have had those.”
Looking back, Scott recalls that academics were still difficult even though the medication was reducing his seizures. In Alex’s case, he immediately began to regain clarity and memory and was able to retain more information in school without ever reducing or changing his medication.
“Just because I wasn’t seizing every night doesn’t mean that that activity wasn’t affecting my brain to be able to function normally every single day,” said Yucht. “I think that my overall life at that time would’ve been improved because my brain function would’ve been improved.”
Alex, who has been on this dietary plan for some years, said he has seen more changes in his daily life than just the absence of seizures. According to Scott, Alex had come to a point where he had stopped progressing in school when he used to perform at an exceptional level. Scott said that without the significant and immediate effects of the Ketogenic Diet, Alex might have continued to fall behind in his studies.
Now that he is more focused in school, has more energy throughout the day, regained a clear memory and has not had any seizures, Alex is committed to staying on track with his diet.
“[Alexander] is one of the most remarkable children that I have ever met,” said Yucht. “He has never once asked ‘why me,” he has never once complained, he has never cried over it and he just does it. He’s never cheated, so much so that at times he’s been overly strict on himself, he is only 11 and he has never cheated—not even a crumb.”
Scott said that he hopes the Keto Kids Club event will prevent families from experiencing some of the things the Yucht family had to. On Oct. 22 the Ambulatory Care Center will host up to 100 people who will enjoy informational seminars, cooking demonstrations, a cocktail reception and a recipe contest. Kids less than 16 years old will be admitted free of charge.