Stevens Johnson Syndrome can occur when a patient has a severe reaction to Phenobarbital. The importance of understanding the damage that some drugs can do to a person is paramount. Julie Farrell understands the seriousness probably as good as anyone. When Julie was only 10 months old she had her first grand mal seizure. She was diagnosed with pediatric epilepsy by her pediatrician after having another seizure. The pediatrician gave her mother Phenobarbital to stop the seizures, telling her that there were no other options and that it was safe. The pediatrician said the only side effect was possible drowsiness.
After two weeks on the drug, Julie’s eyes began to swell shut and she developed a blistering rash all over her body. The doctor told Julie’s mom that it was the Chicken Pox, but it was really Stevens Johnson Syndrome. Julie’s body was over 80% burned from the medication and she spent 27 days in the hospital burn unit. As a result Julie suffered permanent blindness, had severe photophobia, and had dry eye syndrome as well as other complications. Julie’s concern is that many other children will suffer other side effects from their seizure medications, such as headaches, tremors, dizziness, stomach cramps, liver disease, and rashes to name a few. Since children have no say in their treatment, it is up to the parents who generally rely on the doctors for their information. The doctors need to make parents aware of their options.
The Ketogenic Diet May Be the Cure You Are Searching For
A consensus statement was recently released that says diet therapy for seizures should be tried after two or three seizure medications have failed to work. Julie, along with many other people, feel parents should be given the option of the Ketogenic diet from the beginning, and those patients and their parents need to be aware of their choices. After Julie was on the Ketogenic diet for 2 1/2 years, she was drug free and seizure free and remains so to this day.
Now a beautiful grown woman, Julie says she has no memory of the Stevens Johnson Syndrome but does remember the 12 eye surgeries she has had to undergo. She was recently featured on Mystery Diagnosis and asked if it was hard for her to look at pictures of herself with SJS. She said no, but that it was hard to look at pictures before she had SJS. She wonders how her life would be different had her mother known about the effect food could have on her seizures. Julie is thankful to the Charlie Foundation for providing awareness of the Ketogenic diet. More information can be found at www.sjsupport.org/.
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