A Centerville woman whose daughter has Dravet syndrome wants the opportunity to add medicinal marijuana to her lengthy list of medications.
Laura Cossolotto’s 17-year-old daughter, Michaela, was diagnosed with the disease when she was 10 1/2 years old. The diagnosis was a long time coming for the Cossolotto family, who had seen virtually every neurologist at Blank’s Children Hospital in Des Moines and the hospitals in Iowa City. At one point they were told Michaela had febrile seizures, which are benign and the patient outgrows.
Michaela had her first epileptic seizure at 6 months and hundreds more followed that prompted her to be life-flighted on eight separate occasions before she turned 3 years old.
“We lived in the hospital for the first four years,” Laura said.
Michaela since has suffered through up to 10 grand mal seizures in one day. Grand mal seizures, also known as tonic-clonic, are the most violent and debilitating. While some stop on their own, Michaela’s have often lasted up to 3-6 hours and necessitated drug induced comas.
Michaela currently is taking five different anti-seizure medications, two different pain medications, two drugs to deal with the side effects, four supplements to counteract the negative effects of the anti-seizure medications and two steroid inhalers. She takes 100 pills a week.
Laura said Michaela goes into seizures despite all of the medications she takes.
“I’ll do anything it takes to get my daughter the right treatment,” Laura said. “It would improve her quality of life if we had access to legal medicinal marijuana for our daughter. We want safe access. We want it controlled. We want to know what we’re getting.”
Laura said the decision to add a medication is made just like any other, with a lot of thought, weighing the risks and benefits. Michaela’s father, Pat Cossolotto, and their doctors are also involved in the decision process for medications for Michaela.