The Daily Iowegian
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.
“I don’t take the decision to put her on any treatment lightly,” Laura said. “So any drug, any treatment that we choose, we choose it carefully and with a lot of forethought. Again, I’m weighing risks and benefits here. Because that’s what we’re forced to do.”
Laura started doing research into medicinal marijuana two years ago after hearing about the success others were having in controlling seizures. She has become part of a growing list of medicinal marijuana advocates. The National Epilepsy Foundation, Dr. Sanjay Gupta, the Iowa Board of Pharmacy and Concerned Iowans for Medical Cannabis have come out in support, to name a few. Currently, 21 states and the District of Columbia have legalized medicinal marijuana.
A 2010 Des Moines Register poll found 64 percent of Iowans support legalizing marijuana for medical use.
“I started out being cautiously optimistic about whether or not it could help my daughter because we’ve tried everything,” Laura said. “I’m not one to make uneducated decisions and I hope our lawmakers don’t do that either.”
Laura and Michaela will have to wait at least one more year. Senate File 2215, which would create a medicinal marijuana program in Iowa, was called dead on arrival.
“And I can’t understand why this has to wait another year,” Laura said. “I’m grateful to my legislators who seem to be compassionate and understand the need for a safe, effective, responsible program for critically ill patients but they need to act now. We may not have another year.”
In Colorado, where medicinal and recreation marijuana use is now legal, a strain known as Charolette’s Web has been developed and has been shown to alleviate the number of Dravets syndrome seizures. There are currently about 200 patients who are being treated with good results and virtually no side effects, Laura said.
Charolette’s Web is an oil, very low in tetrahydrocannabidiol, which is what gives users a high, and very high in cannabidiol, which is considered to have medicinal properties.
Laura is a member of the Concerned Iowans for Medical Cannabis. The group has been lobbying Iowa legislators, the Iowa Board of Pharmacy and Gov. Brandstad’s office since December educating as many as possible on the benefits of a highly regulated, physician run medical cannabis program modeled after New Mexico’s program so that Iowans who have run out of FDA approved medications for their fragile medical conditions can have safe access to medical marijuana.
Laura said it was a difficult decision to come forward and support medicinal marijuana.
“I’m not interested in recreational use. That’s not my battle,” Laura said. “My interest is in medicine. The health of my loved one and my friends. To me this is a human rights issue. We don’t have a cure and we have tried and failed everything else.”