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10-year old Haley Wiley has a rare type of epilepsy called ESES. At her worst, she had seizures over 50 times a day, and intense steroid treatment seemed like the only option.
“We started a high dose oral steroid and that took care of her seizures. And the EEG improved and she went back to the baseline cognitive function” says Haley’s doctor Rajesh Ramachandrannair.
Her seizures improved but the steroids made her triple in size. She went from 60 to almost 180 pounds. She could barely walk and breathing was a challenge. “People would make fun of me at school and call me names.”
When she stopped the steroids, high tech sleep brain scans at McMaster Children’s Hospital showed severely irregular brain activity. Her brain was constantly firing, causing cogntive and behavioural problems. So, Dr. Ramachandrannair prescribed a combination of new medications along with the ketogenic diet. “Her seizures became less and less and her last seizure was about one year back.”
The diet is strict: high fat, low carb. Haley eats small amounts several times a day. Her body converts the fats into ketones, which are believed to be the key in reducing seizure activity.
Haley’s mother, Tara, is amazed by reduction in the number of seizures “it started at an average of 50 a day and then 40 a day then 30 then you’re like…wow…there were 3 today. Wow, like, a diet did this.”
Haley’s isn’t just seizure-free, she’s also back to a healthy weight. And able to do everything she couldn’t before.
The ketogenic diet doesn’t work with all cases of epilepsy, but for Haley it has been life changing.
