Oct. 17, 2013
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IOWA CITY, Iowa – On a September day in 2011, 3-year-old Kyleigh Burlingame and her mom, Tiffany, took a trip to the zoo. Unfortunately, neither of them got to see a single animal.
That day, Kyleigh had her first seizure.
It was “the scariest moment of my life,” Tiffany remembers. “I had never seen a seizure before.”
Kyleigh was diagnosed with Doose syndrome, a form of childhood epilepsy. With this particular disorder, seizures can originate from all over the brain as opposed to one focal point. This means Kyleigh can have different types of seizures–where she stares off, jerks, or drops to the ground and hits her head, for example.
Kyleigh’s local pediatrician prescribed her an anti-epileptic drug. The medication did little to control Kyleigh’s increasingly severe seizures, however, so the Burlingames were referred to University of Iowa Children’s Hospital pediatric neurologist Charuta Joshi, MBBS.
Tiffany, originally from Iowa City, felt confident coming back to her hometown for Kyleigh’s care.
“The first time I came here, I was hopeful because I had grown up around the hospital and figured they could fix her,” says Tiffany. “I just had that faith and hope.”
After several other anti-epileptic drugs failed to improve Kyleigh’s condition, Joshi suggested a ketogenic diet, which is high in fat and low in carbohydrates and proven to be particularly effective in Doose syndrome patients. On the diet, Kyleigh can only eat specific foods and brands, and Tiffany uses a special online calculator to measure every meal to the tenth of a gram.
“If you were to find a Katy Perry or Justin Bieber song on the radio, you would be blessed with a dance, a song, or both, and you would probably have to join in. She’s such a fun, fun kid, and I get to see that, now that she’s better.”
“It’s not just about her medicine, it’s about Kyleigh’s life,” says Tiffany. “And giving Kyleigh her life back has definitely been Joshi’s goal.”
Joshi’s diet suggestion, with the help of a UI Children’s Hospital dietician, has made all the difference in Kyleigh.
At one point, Kyleigh needed a gastric tube placed in her body so she could receive her ketogenic diet more easily.
“When she got the tube, you could see immediately that she was clear,” Tiffany recalls. “She could sing her ABCs again. She could clap her hands, sing her favorite songs, and recognize her favorite shows. It was her miracle.”
The Burlingames also share a special connection to UI Children’s Hospital–Kyleigh’s grandfather is a welder working on construction of the new UI Children’s Hospital. Kyleigh’s seizure activity has gone from hundreds a day to just weekly seizures, and Tiffany credits the doctors, nurses, and staff at UI Children’s Hospital for Kyleigh’s progress.
“They embraced Kyleigh, myself, and my family as if we were their own family,” Tiffany says. “They just took such great care of us.”
The condition that was once debilitating for Kyleigh is now under control, so she can get back being a typical 5-year-old.
“If you were to find a Katy Perry or Justin Bieber song on the radio, you would be blessed with a dance, a song, or both, and you would probably have to join in,” says Tiffany. “She’s such a fun, fun kid, and I get to see that, now that she’s better.”
You can watch Kyleigh’s story HERE.