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RENO, Nev. (AP) — The mother of a Reno girl with a rare form of epilepsy is trying to secure permission for her daughter's school to administer medicine that could halt potentially deadly seizures.
Gabriella Bertolino told the Reno Gazette-Journal (http://on.rgj.com/1JZAYF3) that she has been trying to get the Washoe County School District to allow the drug 6-year-old Scarlett needs before her first day of school next week.
The only thing that has been successful in stopping Scarlett's life-threatening seizures is a squirt of Midazolam in each nostril. Doctors at the University of California, San Francisco Medical Center prescribed the drug as a rescue medication because 19 other anti-epileptic medications failed to control the girl's seizures.
But the school won't administer the drug, said Bertolino. UCSF sent new medication orders in 2013, but district officials say they don't have clearance from the Nevada State Board of Nursing to provide Midazolam.
So Bertolino always stays within a five-minute radius of Scarlett's school, knowing that a phone call would give her only minutes to get to the girl's classroom and administer the drug. She spends most days in the family's SUV, parked outside of the school. Sometimes she goes to a nearby coffee shop or for short walks.
"I am just really trying to keep my daughter alive and learning," she said. "She loves school, and I will stop at nothing to keep her there even if that means sitting in the parking lot."
Scarlett's was diagnosed with cerebral palsy and a form of catastrophic epilepsy at 6 months old. Half of her brain has been removed to control the potentially fatal condition.
The disease is so severe that when Scarlett was 4, the Bertolinos and their doctors decided to have "do not resuscitate" paperwork in place in case a seizure left the girl on life support.
The director of student health services for the Washoe County School District, Dana Balchunas, said she didn't know Scarlett needed ne medicine.
She said she thought Diastat, a drug used by other students with seizures, would treat Scarlett's condition. Balchunas said she believed the family was asking for Midazolam because Diastat is administered rectally and can be embarrassing for children.
Bertolino said she has been clear that other medications have stopped working and has followed up almost monthly since Scarlett was enrolled in preschool two years ago.
Scarlett isn't the only child in the district waiting for approval.
Although Balchunas said she's waiting for the OK from the state nursing board because the drug is so powerful, board director Debra Scott says the district already has approval to use Midazolam.
"I'm not sure why they say it can't be used. It's there in our last meeting minutes," said Scott. She said a registered nurse or licensed practical nurse can administer the drug.
"We are not the ones holding this up for this 6-year-old," Scott said after several calls from the Reno Gazette-Journal.
But Balchunas maintains that the minutes aren't clear and that emails sent to her tell a different story. She said she is going to wait until the next meeting, in late August, for clarification.
"I could lose my license if something happened," Balchunas said.
If there is quorum and a policy is approved at the August meeting, the drug could be accepted sometime in the fall, she said.
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Information from: Reno Gazette-Journal, http://www.rgj.com
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