Ketogenic diet brings relief for rare disorder

- After years of struggling, Naomi Mersinger is focusing on just being a kid, all thanks to a special diet.

Naomi has glut-1 transporter deficiency. The problem was so rare, she went undiagnosed for years.

"I just remember having a blank part of my life that I don't remember," Naomi says.

"She woke up one morning paralyzed on one side of her body and same situation by the time she got to the hospital everything was resolved and nothing diagnosis every pointed to anything specific," Shannon Mersinger, Naomi's mother remembers.

As a pediatric nurse, she began videotaping the seizures but still got no real answers.

Recalling her frustration, she turned to multiple experts.

"We saw lots and lots of different doctors and we started taking her to natural medicine, 'Anyone please, tell me what's going on with my daughter,'" she said.

Then three years ago, neurologist Dr. Parrish Winesett at Johns Hopkins All Children's hospital found the problem. Naomi's brain can't use sugar as an energy source, causing her brain to periodically short-circuit.

"For so long we were just fighting this invisible monster, so to have something that we knew what it was was a huge relief," she said.

That relief didn't come from medications, it came from a ketogenic diet.

John's Hopkins All Children's dietitian Stacey Bessone says the medically supervised diet shifts the primary energy source in the body from glucose, a sugar, to fats, creating ketones.

"By putting her on the ketogenic diet, we're bypassing that part of metabolism so that her brain can grow and develop and receive energy so in her case the ketogenic diet is the primary treatment," Bessone said.

The diet restricts carbohydrates like pizza, cake, even French fries and replaces them with foods like chicken, carrots, coconut oil, heavy cream and berries in precisely measured amounts.

"It’s not an easy diet, they do struggle at times, but I think a lot of them feel a lot of the rewards of doing the diet," Bessone explains.

Because the diet can lead to deficiencies, Naomi gets regular blood work and physical exams on this medically supervised diet. As for her diet, Naomi's adjusted to her meals.

"For breakfast, I have mashed potatoes with cheese and bacon and some butter in there." she said.

Shannon says Naomi's dropped down to only one medication and has no doubt this diet is working.

"You know, it's been it's been good and to see the results we haven't seen one seizure, not one movement disorder since she started the diet so she's back to our little girl, so it's worth it," she smiles.

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