Tina McDermott is seeing signs of progress in her son, Ryan, again. But it took getting him off cannabis oil.
The McDermotts live in Davenport, and 10-year-old Ryan, who suffers a severe form of epilepsy called Dravet syndrome, underwent a year-long cannabis trial through the University of Iowa. Doctors administered Epidiolex, a purified cannabidiol, or CBD, created by GW Pharmaceuticals, based in the United Kingdom.
The oil, his mother said earlier this month, didn't work.
"He never ever had a seizure-free day on the cannabis oil, except when it was right out of a hospital stay where they had him pumped so full of medication," McDermott said.
She has grown weary of putting all of her eggs in one basket, now that she is about to enroll Ryan in a different trial through the Mayo Clinic. The new trial isn't marijuana-based.
Ryan will be given fenfluramine, once part of an anti-obesity treatment called "fen-phen." McDermott hears fenfluramine in small doses is showing good signs for treating seizures, but she's careful not to set her hopes too high.
She said she already is disappointed with cannabis oil, which appeared to be helping other children with Ryan's condition. After all the advocacy she put into the oil and the time her family invested in the clinical trial, she's angry it didn't work.
"I feel I wasted my time," McDermott said. "I didn't have any other choice. You really don't with this syndrome."
Diagnosed as a toddler with Dravet syndrome, Ryan was practically dealt a life sentence of intellectual disabilities and daily seizures. He has been on 17 different anti-seizure medications, and all, his mother said, have come with minimal to severe side effects.
The Quad-City Times has been reporting on Ryan McDermott since December 2013.
Cannabis oil showed promise to McDermott in late 2013 and 2014 at a time when medical marijuana advocacy in Iowa reached a fever pitch.
The state passed a law in 2014 making it legal for parents of children suffering intractable epilepsy to possess cannabis oil with only trace amounts (less than 1 percent) of tetrahydrocannabinol, or THC, the main psychoactive component.
No other patients are allowed to possess the oil under the law, and without a comprehensive program to produce and sell medical marijuana in the state, card holders such as McDermott say Iowans are forced to violate federal law to bring it across state lines.
The McDermotts considered moving out of state. Then, in 2015, Ryan and a handful of other children were picked for the Epidiolex trial.
McDermott said she assumed Ryan started out on the placebo because nothing changed. Midway through the trial, Ryan switched over to taking the oil. His mother fed it to him in doses through a tube into his abdomen.
"He still ended up getting status a couple of times, and he still had grand mal seizures," she said. "It didn't have any bad side effects to any of his organs or anything like that. He just lost muscle tone and the ability to do things. He couldn't even hold his own head up, and he stopped rolling over.
"I kept thinking it would be fine, because it's helping other kids. But I decided to pull him out because he was still having seizures."
Kim Novy of Altoona, Iowa, had her identical twin daughters, both diagnosed with Dravet, in the same study as Ryan. She said this month that she, too, is pulling her daughters out because even though the oil showed benefits to helping the 15-year-old girls communicate, it did not stop seizures.
"Our number one goal is to try to control seizures," Novy said.
A spokesperson for GW Pharmaceuticals could not be reached for comment.
Ryan McDermott, whose developmental level is that of an 8-month-old, suffers 10 to 20 seizures a day, according to his visiting nurse, Randy Cox, with UnityPoint Health. Cox knows when a seizure is coming on because Ryan's eyes get really big and his arms start to go up.
After Tina McDermott weaned Ryan off cannabis oil, she said the child rolls over on the floor again and holds his head up like he used to.
His appetite also has improved. She fed him cheesecake for the first time in a while this month.
"He's such a sweetheart," she said. "He's like the sweetest boy ever."
The failure of the cannabis oil trial for Ryan has not changed Tina McDermott's views on medical marijuana.
"Just because it didn't help Ryan," she said, "it can be very beneficial for other people."
She added that both Iowa and the federal government should remove marijuana from its Schedule I classification, where, along with drugs such as heroin, it's deemed as having a high potential for abuse and no medical benefit.
But at this point, the fenfluramine trial is "the right thing to do," McDermott said.
If it doesn't work, her choices include vagus nerve stimulation, which requires surgery to insert a pacemaker, or a corpus callosotomy, in which the head is split open and the corpus callosum is severed to prevent seizures.
"That scares me," McDermott said. "When I heard that, the tears were flowing out of my face. I want that to be the last possible choice."
She keeps three tubes of cannabis oil around, just in case.
It's not purified cannabidiol. It has more THC than Iowa currently allows.
"I'm breaking the law, and I don't care if you put that in the paper," McDermott said. "Thank God I've got good hookups."