Twelve-year-old Arizonan, Annalise, was recently diagnosed with Febrile infection-related epilepsy syndrome, or FIRES, a rare brain disorder. It causes nearly continuous seizures and often leads to significant brain injuries and/or death.
Annalise had to be put into a medically-induced coma, according to Tucson.com. With this condition, epilepsy-preventing medications aren’t likely to work. No one knows what causes FIRES.
In early May, Annalise woke from her coma.
Maryann Estrada-Lujan, Annalise’s mother, said, “She had continuous seizures, and they weren’t able to break status even after several attempts with medications. They put her into a medically-induced coma to save her brain from further permanent damage.”
Maryann started researching FIRES and came across cannabidiol, the second most-prominent compound in marijuana. She learned of studies being conducted regarding cannabidiol and seizures, especially difficult-to-treat forms of epilepsy like FIRES and Dravet-syndrome. A recent study regarding cannabidiol and FIRES showed that the both the length and frequency of seizures decreased.
Dr. Eric Marsh said, “This stems from the whole medicinal marijuana craze that is out there. There are lots of anecdotes that were on social media that suggested that marijuana high in cannabidiol and very low in THC could be anti-epileptic.”
When Maryann read this information, she began speaking to Annalise’s doctors about trying cannabidiol treatment. She said, “I wanted to know if my daughter was eligible. Dr. Wilfong was new to Arizona and didn’t have his license to use it here, so he got with his partner, Dr. John Kerrigan, who had his license for this Schedule 1 drug.”
May 6th marked Annalise’s first dose of Epidiolex. Within three treatments, her continuous seizures stopped.
Maryann said, “I was there when she woke up. It was amazing. It was truly amazing to see eyes again.”
Annalise has improved tremendously already. She’s able to follow simple commands and can breathe on her own.
Now, Annalise only has a couple of miniscule seizures a week lasting between 8 to 10 seconds.
Dr. Kerrigan also said, “While cannabidiol (CBD) is potentially one of the treatment avenues that has played a role in her progression, we can’t say for certain it’s what led us to this point, as we have been actively caring for and providing various treatments throughout her stay at Phoenix Children’s. Controlled scientific trials of CBD are currently underway, which will hopefully clarify its role as a possible treatment for children with severe forms of epilepsy.”
Photo: Maryann Estrada-Lujan/Tucson.com