DAVENPORT, Iowa - A Davenport mother who has pushed for legal medical marijuana says the treatments for her son did not work but says the fight is worth it for other patients.
Tina McDermott’s is the mother of six children. Her youngest son Ryan, 10, has a severe form of epilepsy known as Dravet Syndrome.
Ryan has been on 17 medications for the 10 to 15 seizures he has per day. McDermott says no medication has completely helped him, so she turned to cannabis oil.
“It’s very rare and very vicious,” said McDermott when talking about Dravet syndrome.
McDermott pushed for Iowa Lawmakers to make cannabis oil legal for children with severe forms of epilepsy. She hoped the cannabis oil would help other children and her son get relief.
“I really thought this was it. This is going to help,” added McDermott.
In 2014, Iowa passed a law making cannabis oil legal for patients suffering from severe forms of epilepsy, like Dravet syndrome.
The McDermott family put Ryan into a clinical trial through the University of Iowa for the oil. Ryan was given Epidiolex, or CBD, without THC, or tetrahydrocannabinol that is said to create the marijuana high. After being on the trial for over a year, McDermott decided to take Ryan off the oil, stating that it wasn’t working.
But even though the oil didn’t work for her son, she hasn't given up on some forms of cannabis oil helping her child someday.
“This certain Epidiolex is what didn't work for Ryan. Not the CBD and THC that's out there. I have not tried that,” said McDermott.
Tina hasn't tried the cannabis oil with THC because that form isn't legal in Iowa. Now, she is turning to another 28 week clinical trial through the Mayo Clinic, which isn't marijuana related. McDermott says Ryan cannot be on the CBD oil while involved in the new clinical trial.
Ryan will undergo the trial while taking a placebo or be given Fenfluramine. Fenfluramine was once used in high doses as an anti-obesity medication, but is no longer on the market as a weight loss medication.
Fenfluramine has been reported to help with epilepsy, although its exact antiepileptic mechanism has yet to be fully explained.
The Fenfluramine currently being researched in pediatric patients with Dravet syndrome and is given at a maximum of 30mg per day.
“We thought it was best to move forward because I want more results,” explained McDermott. “We want to stop the seizures. His poor little brain can't even develop when it's continuously seizing.”
McDermott says she got her hopes up with the cannabis oil and is approaching this next trial with caution.
“With his syndrome it could be one seizure that can take him from us,” said McDermott.
McDermott says if Ryan doesn't improve with the next clinical trial, she will turn to cannabis oil with THC. She is still a firm believer that cannabis oil works.
“What the kids are on that's working for them is the CBD oil with THC and we have not tried that. I can have it but its not available for me to get it so you basically break the law and people would do for their child,” said McDermott.
Iowa lawmakers say they may take up medical marijuana again this session. The program expires in July 2017.
Supporters want to expand cannabis oil use, but measures to do so failed last session.
Currently, medical cannabis oil is approved for a small number of conditions, but it's illegal to buy in Iowa. Patients or caregivers have to travel out of state to buy it.