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 during a visit at Mayo Clinic. The diagnosis was hard 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 and one time was told she had febrile seizures which are benign and the patient outgrows.
Laura said her daughter 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 of age.
“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 in duration and necessitated drug induced comas.
Laura said when Michaela is struck with a grand mal seizure she looses consciousness, falls to the ground, often stops breathing, turns blue, drools and shakes violently. Dravet syndrome seizures can cause brain damage and death.
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. She said they have tried every anti-seizure medication; sometimes they work, sometimes they don’t.
Laura believes medical marijuana is an option that can help her daughter and others with Dravet and possibly replace some 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.”
Michaela has asked why she has to take all of the medications she does.
“She doesn’t want to take all of this medicine,” Laura said, adding Michaela has been hospitalized multiple times because of side effects from some of the medications she takes. “I think that if we had a safe alternative that we could replace some of these (medications). But because Iowa does not have a medical cannabis program we don’t have a choice.”
Laura started doing research into medicinal marijuana two years ago after hearing about the success others were having in controlling seizures. Now she’s optimistic medicinal marijuana in Iowa is the right decision.
“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 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.”
Laura is part of a growing list to advocate medicinal marijuana.
The National Epilepsy Foundation, Dr. Sanjay Gupta, the Iowa Board of Pharmacy and Concerned Iowans for Medical Cannabis, to name a few.
Currently, 21 states and the District of Columbia have legalized medicinal marijuana.
According to a Des Moines Register poll in 2010, 64 percent of Iowans support legalizing marijuana for medical use.
Medicinal marijuana is also prescribed to patients with cancer, multiple sclerosis, AIDS/HIV, spinal cord damage, glaucoma, anorexia, leukemia, Crohn’s disease and Parkinson’s disease, which is just a partial list of diseases.
Laura and Michaela will have to wait at least one more year in Iowa. Senate File 2215 introduced this month in the Iowa legislature by Senate Democrats to emulate New Mexico’s medicinal marijuana program 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.”
Laura said her main goal is to educate the public and politicians about medicinal marijuana. She said there’s a lot of misinformation floating around in the public about cannabis and it’s medicinal uses.
“I think one of the biggest obstacles for us to overcome is to educate the public about the fact that this is not something that’s smoked,” Laura said. “I’m afraid that people think we want our children to smoke. That is not it at all.”
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.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a childhood seizure disorder. Children with Dravet do not out grow the condition.
Dravet syndrome seizure triggers include emotion, excitement and changes in temperature. Seizures can strike without triggers as well.