HOPE FOR HEMP: ‘We had to try something’
Parents of young Fruita boy with rare, degenerative disorder say hemp extract helps their son
In this three-day series, The Daily Sentinel is examining the emergence of hemp as a potential cash crop in western Colorado, the technical and legal challenges associated with growing and selling it and the medical benefits some say it offers.
Ryker Bou’s mother uses a needleless syringe to measure his medicine, filling the plastic tube with a yellowish liquid that resembles cloudy olive oil.
She pulls the plunger, eyeballs the dosage to make sure it’s exact, and quickly shoots the liquid into his G-tube, chasing the medicine with a bit of water to ensure it flushes all the way through and gets where it needs to go to be absorbed.
This substance is what has helped the Bous get their son’s personality back, the one they lost when he was sleeping 22 hours a day, when he wasn’t making eye contact or sticking out his tongue, when he was mostly just lying there like a zombie.
This liquid has been a miracle for Ryker and his family, who turned to it after rushing him to the emergency room after side effects of his anti- seizure medications, approved for use by the federal government, nearly killed him when he was 2½ by slowing his breathing levels to near nothing.
This miracle liquid is considered by the same government to be so dangerous it cannot safely be tested. It’s grouped with heroin, Ecstasy and LSD, and has no current accepted medical use, a schedule I substance, according to the Drug Enforcement Agency, and it’s not approved to treat any ailment by the Food and Drug Administration.
But to the Bou family, this liquid has brought back their son, and using cannabidiol — also called CBD or hemp extract, derived from the cannabis plant — has given him quality of life for whatever time he has left with them.
When Ryker was born, he did it on his own terms, and set the course for a life unlike anyone else’s.
He was three weeks early, and the way his dad, Michael, describes it, he “just shot out.” His parents had no idea how unique he was at the time. Eventually they would come to discover he’s one of the rarest children in the world.
Around the time Ryker turned 3 months old, his parents started noticing something wasn’t quite right developmentally. He couldn’t hold his head up, and they noticed he was a bit cross-eyed. A physical therapist told them he had hypotonia, a condition also called “floppy baby syndrome,” or poor muscle tone.
They also suspected he was having problems with acid reflux, because Ryker’s behavior seemed like he was hiccuping a lot, something hard to distinguish sometimes in babies. But those small hiccup-like movements were actually infantile spasms, discovered after he had an EEG when he was 18 months old.
Ryker eventually would be diagnosed with a condition caused by two mutations on his PEX10 gene — a peroxisomal biogenesis disorder, one called Zellweger syndrome spectrum in particular. Genetic experts who met with the Bou family told them it’s so rare that they only know of one other child in Colorado with the same diagnosis.
These seizures, difficult to diagnose without measuring Ryker’s brain waves, look like a tightening of muscles, a stiffening of his body. They’re hard to see sometimes — it can just look like a pause where he stops moving his arms. They’re not violent like grand mal seizures, and the Bous hope they’ll never get to see one of those.
The diagnosis came with a small relief. They finally knew what was going on with Ryker. However, it brought a certain fear and realization — this was such a rare diagnosis that no one could really tell them much for certain, it was an “orphan disease” that doesn’t have research or studies, and many medical professionals had never seen a kid like Ryker before.
Though they found comfort and support from finding other families with children diagnosed with seizure disorders, and even a few that had the same diagnosis as Ryker, that connection also came with a sad realization. They would all lose their children someday, and the posts in the online support groups from parents who lost children brought that reality a little too close to home for them. In general, it seemed the earlier in life the child was diagnosed, the shorter his or her lifespan would be.
So Michael and Brittany’s focus became the quality of Ryker’s life and appreciating the time they had with their son, and soon they found that conventional medicine would contradict those goals and they would have to venture into uncharted territory to meet his needs, with a substance classified as a dangerous drug by the federal government.
Ryker’s days at home in Fruita are punctuated with a strict schedule of feeding, provided by his parents who are his main caregivers, and by naps, which are vital to keeping him from getting stressed out and being more susceptible to seizures. His feeding schedule starts around 10:30 a.m. and doesn’t end until 1 a.m., and he gets seven separate meals over the course of the day through his G-tube.
Sometimes, he plays, he sticks his tongue out when he’s happy and he can roll over and grab his favorite toys. He loves music and his favorite artist appears to be Daiya, and he responds positively to her song, “Sit Still, Look Pretty,” by moving his arms and legs to the beat. He likes to interact with his 5-year-old brother, Jacob, and they’re learning how to use an interactive communication device that Jacob can use with a screen and a clicker to teach Ryker to indicate when he would like to use simple commands like “more,” “stop,” and “go.”
The Bous have seen tremendous improvement in Ryker’s mood and well-being since first putting him on doses of CBD, or hemp extract, in May.
It was a decision that came over time, out of desperation, one they didn’t take lightly.
A neurologist who treated Ryker had put him a combination of two anti-seizure medications, which cause peripheral vision loss and lethargy with repeated use over time, and can build up in the system and cause toxicity.
Soon after he was taken off one of the medications, he started having stronger seizures that could last up to 15 minutes at a time, where his body stiffened and he brought his arms together and seemed paralyzed.
At the time, doctors recommended putting Ryker back on the medications. But they noticed Ryker was sleeping for increasingly longer periods of time and wasn’t responsive.
“He was sleeping 23 hours out of the day and wasn’t alert or anything,” Brittany said.
They took him to the emergency room, afraid that he might be having seizures while he was unconscious. The ER doctor told them the drug was shutting down his respiratory system and dangerously lowering his oxygen levels.
This incident when Ryker was 2½ years old led them to start looking for alternatives. They realized their goal wasn’t in line with what some specialists had recommended.
“In preventing one more seizure, his quality of life decreases tremendously,” Michael said. “Is it worth having them sedated for the rest of their life, or having a couple of seizures every once in a while, so they can live instead of being asleep for their entire lives?”
Ryker’s respiratory system also couldn’t handle being on the medications, he was hospitalized several times for viral lung infections, and they couldn’t use steroids because of his low muscle tone.
The Bous were stuck in a place only the parents of children with rare disorders understand. They were afraid of making things worse, but terrified of having them stay the same. They weren’t armed with enough information to take away the risk of making choices, and so they had to have faith that they were making the right decisions for Ryker.
It was an uncomfortable place to be — they’re not doctors — but this little person was their responsibility, and things weren’t going right. They made up their minds to make a change.
“We have to be his advocate. We have to be the experts,” Michael said.
EXTRACT MAKES DIFFERENCE
They decided to wean Ryker off the seizure medications and try Charlotte’s Web, a variety of hep extract that doesn’t have any THC, the psychoactive substance in cannabis that produces a high for those who consume it. They found they could purchase it from Rimrock Wellness Center, one of two retailers who carry Charlotte’s Web in Grand Junction.
At first, it cost $440 for a bottle, which lasted about 2½ months, though the price has decreased recently. Still, it isn’t covered by insurance, unlike Ryker’s former seizure medications, and the family is on a limited income because Michael was laid off of his job last year at Christmas.
“We don’t have savings,” Brittany said. “We just sort of have resigned ourselves to the fact that we live day to day.”
While many of their health care specialists and therapists are supportive of trying hemp extract for Ryker, they can’t recommend it officially and doctors cannot prescribe it. CBD is still considered a schedule I substance by the federal government, it hasn’t been officially approved for consumption or to treat any illnesses or conditions by the FDA, which regulates other medications.
There is a fear that because the extract comes from cannabis, there could be some sort of retribution for giving it to their son. There were skeptical comments from others, and some good-natured jokes about getting their son “high,” which is impossible with Charlotte’s Web, because it doesn’t contain any THC.
Now, the family says that anyone who knows Ryker can see the difference in their now 3½-year-old son, and that the risk of the side effects from prescription medicines approved by the federal government are far greater than the risk of being busted by someone for using a non-psychoactive substance that improves their child’s quality of life.
Eventually they were able to switch to another seizure medication called Kepra, which Ryker still takes in small doses in addition to his extract.
The Bous negotiated the dosage themselves, finding helpful information through Realm of Caring, a Colorado Springs not-for-profit organization that has a goal of providing support, information and research on cannabinoid use. So far, they think hemp extract is working and hasn’t had any ill effects on Ryker’s vital functions, especially his liver, which they are closely monitoring.
Ultimately, deciding to try hemp extract is something they’re glad they did and they would encourage other parents of children with unusual medical conditions to do research as well.
“If your kid has such a rare disease, there’s never going to be any research for your specific disease anyway,” Michael said. “Everything is uncharted territory.”
Ryker’s response to the CBD has been notable, they said. When they used to take him to physical therapy and Ryker saw where they were, “He would just turn over and pretend to fall asleep, he would avoid them,” Michael said. Now, he’s happy to be there, and has stamina to last the full appointment for almost an hour.
For other parents in a similar situation, the Bou family recommends exploring the idea of hemp extract, even though it’s in a legal gray area that may make it seem scary.
“I’d be more scared of pharmaceuticals,” Brittany said. “Even if it’s not right for their kids, they’re less likely to have such severe side effects.”
“We had to try something,” Michael said. “It is a degenerative disorder, so we don’t know how long …” he paused. “So it just kind of helps to spend as much time with him as possible.”