Special diet helps girl with epilepsy

Parents know that getting kids to eat — sometimes anything — is an endless struggle. Trying to get them to eat food that’s good for them even more so. But what if you must control each and every morsel that your child eats for medical reasons? That’s the task that Naida Casanova faces daily with her daughter Lauren Chavez.

Lauren, 9, has refractory epileptic seizures— that means seizures keep happening day in and day out. For Lauren, that meant 20 to 25 seizures a day.

Today, however, she is “down to three a day at most,” says her mom. Some weeks, Lauren has no seizures at all.

The Balch Springs, Texas, mom believes the 90% reduction in the number of Lauren’s seizures comes from her daughter being put on a highly specialized and restrictive diet nearly eight months ago by Dr. Rana Said, a neurologist and epilepsy specialist at Children’s Medical Center, and director of the ketogenic diet program.

Ketogenic diet
The ketogenic diet is very high in fat (about 90 percent of the calories come from fat), contains a small amount of protein to ensure a child continues to grow, and few carbohydrates. The diet also is characterized by very small portion sizes compared to what even a child would normally eat.

The ketogenic diet mimics starvation by forcing the body to burn fat round the clock for energy. Normally, the body burns glucose for energy, but by having a diet very high in fat and low in carbohydrates, the body converts fat into ketones, which are then used by the brain to create energy.

While no one knows exactly why the ketogenic diet reduces epileptic seizures, it does work in some children whose seizures aren’t controlled with medications. And, more importantly, a number of children stay seizure-free after they come off the diet with the help of medications.

Lauren’s mother is so dedicated to making sure her daughter follows the diet exactly that she used to come to school and feed her lunch. Ms. Casanova made the lunch more attractive by feeding it to Lauren on a Cinderella tea party set. The tea set helped Lauren not to focus on the small portions she could eat because her lunch filled up the tea set plates.

Lauren has improved on the diet
Before she started the ketogenic diet, Lauren’s seizures caused her to drop suddenly to the ground and she had many facial injuries and broken bones. Even today, she has to wear a special helmet at school with a face guard to protect her face and head from injury when she falls. All this affected her school performance and her interactions with her classmates.

But today, Lauren, who’s in the third grade, gets to eat lunch with her friends. “She’s more secure with herself,” says her mom. Lauren also is speaking in complete sentences whereas before she only talked in brief phrases. Says her mom: “She’s more active and has better grades. She’s back to her old self.” And she has no more drop seizures.

Halloween party
On Oct. 26, Lauren got to attend a Halloween costume party at Children’s. She dressed as a witch. At the party, children on the ketogenic diet got to play games and receive small prizes. The party is just one way Children’s tries to normalize children’s experience with their disease.


Pictured are Lauren with Dr. Said, who is dressed up as Snow White for the party, and with dietitian Mary Susan Spears, RD, CSP, LD. Spears works closely with Dr. Said and families to ensure that children adhere to the diet and maintain optimal nutrition and growth during their time on the ketogenic diet.

Rare diagnosis, even rarer treatment

Around this time last year, Jennifer Matlock noticed that her 14-month-old daughter, Peyton, was showing some concerning signs. Her stomach hurt and there was drainage from her belly button.

Jennifer didn't know if it was a big deal, but she felt like safe was better than sorry, so she took Peyton to see her pediatrician, Dr. Elenna Chinn at Rockwall Pediatrics. Dr. Chinn decided after examining Peyton that she needed a follow-up appointment with a specialist; so, she referred her to Dr. Patricio Gargollo, a urologist at Children's.

As soon as Dr. Gargollo saw Peyton, he suspected she had a urachal cyst. An ultrasound confirmed his suspicion.

"Urachal cysts only occur in about one in 5,000 patients," Dr. Gargollo said. "I had only seen two cases before Peyton in my career. But her symptoms were distinct, and we take urachal cysts very seriously because they may lead to urachal cancer if left untreated."

Urachal cancer is one of the worst types of urological cancer. It's extremely aggressive and fatal for nearly everyone who gets it.

HIdES procedure saves the day
If you're like me, you'd expect that there would be an extensive, taxing procedure for such a potentially dangerous condition. But if you're like me, you also don't have the medical expertise of Dr. Gargollo.

Dr. Gargollo invented a new surgical procedure called HIdES earlier this year. It's detailed in this article, but the gist is that he's able to perform elaborate robotic surgeries through two tiny incisions directly beneath the waist line and one incision in the belly button.

The benefit of the procedure is that the resulting scars are hidden behind swim suit bottoms when children like Peyton go to the beach. And for Peyton, that meant the day after surgery.

Because the incisions with HIdES are so small, Peyton was fully recovered the day following her cyst removal and able to leave directly from the hospital for a beach vacation with her family.

Now, a couple of months later, Dr. Gargollo is confident her cyst will not return.

"She's doing really well," he said. "There's no reason to worry about the cyst coming back, and there's no evidence that she ever had it removed because her scars are hidden."

Peyton's mom is grateful.

"We were confident going into the surgery, because we had done our research and knew Dr. Gargollo was going to take care of it," Jennifer said. "She's bounced back completely, and we're just happy that what could've been a really big deal didn't have to be."

A hospital room with a view

Presley Parker's mom, April, had never been to Children's at Legacy before Presley was admitted last week. Much to her surprise, the hospital was anything but typical. Horses roamed in a field outside their window and everything was "designed for kids."
April wrote a blog entry about their inpatient stay...http://theparkersparadise.blogspot.com/2010/10/journey-to-hospital-and-back.html