By Tara Bannow • The Bulletin
To learn more about Dylan’s story or contribute to the family’s fundraising campaign, visit www.helpfordylan.com
A couple of weeks ago, 10-year-old Dylan Cain — whose severe cerebral palsy renders him unable to walk without assistance and severely limits his speech and cognition — asked a family friend to pick him up. She told him her back was sore.
“So he said, ‘Pray for Karen’s back,’” recounted Dylan’s mom, Jinger Cain, of Bend. “So he prays to help her feel better and Karen said, ‘I’d like to pray for you. What would you like?’ He said, ‘I want a Galileo.’”
He was referring to a device he had tried a few days earlier at a conference in Seattle with his parents. It’s a vibrating plate patients stand on that stimulates voluntary and involuntary muscle contractions — lots of them, over and over — while they’re being held in proper alignment, either by straps or peoples’ hands.
Cerebral palsy commonly leads to deformities caused by a lack of muscle control around the bones — a problem Dylan is already experiencing — and the Galileo is designed to train those muscles to hold the body in proper form.
“We can change his brain with frequency, intensity and duration,” Jinger Cain said. “That’s what the Galileo does. It falls completely in line with all of the stuff we’ve been doing with him for 10 years.”
There isn’t a wealth of research supporting the use of vibration therapy on cerebral palsy patients, but Jinger and her husband, Mark Cain, are no strangers to choosing alternative remedies despite expert advice to the contrary. They’ve used a long list of such therapies on their son, and they attribute all of his development to their willingness to go against the grain.
Dylan has undergone cranial sacral therapy to get more oxygen into his brain. He received an experimental stem cell infusion, despite one doctor’s assertion, Jinger Cain said, that it wouldn’t help. They did exercises called patterning, which most experts dismiss as unfounded. He also continues to get a form of therapy called neurofeedback.
The Bulletin’s High Desert Pulse magazine chronicled the family’s foray into hyperbaric oxygen therapy, which involves sitting in a chamber breathing pure oxygen under high air pressure, in 2009. Dylan was 4 years old at the time.
Dylan’s first 120 oxygen treatments were done at Bend Memorial Clinic. In the beginning, the family lived in Corvallis and stayed in Bend during the week for the treatments. They officially moved to Bend in 2012 and have since purchased their own oxygen chamber to use at home.
Improvement, but how?
Although Dylan’s parents can’t pinpoint which therapy did what, they say everything they’ve done over the years has led to significant improvements in their son’s ability to walk, talk, see and think.
He can walk short distances after being helped into a walker. He speaks full sentences. He doesn’t need diapers. On a recent weekday morning, Dylan, prompted by his mother, even said “Hello” in seven languages.
A few months into the hyperbaric oxygen therapy, Mark Cain said, his son spoke better and conveyed his needs more clearly. In his home recently, Dylan casually asked his caregiver to help him get rid of an ad that had popped up on his iPad. He asked a reporter where she had gone to school.
“He’s been progressing at this level,” Mark Cain said, “but we’re hoping that the Galileo will give him a big jump up and give him that strength and balance.”
Dr. Barry Russman, a pediatric neurologist with Oregon Health & Science University, questioned how much of Dylan’s improvement came from the therapies they’ve used. He’s researched hyperbaric oxygen therapy and determined it’s not effective.
All children with cerebral palsy, a condition caused by damage to the developing brain, will improve to some degree without intervention as a result of normal development, he said.
“With parents, they say, ‘See? My kid could not even stand and then we did this therapy and a year later, look, he’s standing,’” Russman said. “The answer is, how about those children who did not receive the therapy who are as severely involved? What will they be doing a year later? Some of them will be standing and will walk with support.”
Russman disagreed with the therapies the Cains have used — including the stem cell infusions and cranial sacral therapy — citing a lack of evidence.
Jinger Cain said she’s heard that from several neurologists, including more than one from OHSU. She said she doesn’t take her son to neurologists anymore.
“My whole world is, ‘I hear what you say, I hear what they’re saying, and I’m going to do what I want,’” she said.
The earlier the better
People with cerebral palsy can’t control many of the same muscles other people can. Without the typical use associated with daily activities, those muscles become tight and shorten, rendering them unable to support proper bone growth. This leads to joint deformities and sometimes even dislocations.
That lack of muscle control is causing Dylan’s ankles to turn sharply inward, a deformity that will only worsen with time, further diminishing his chances of walking.
When it comes to children with cerebral palsy, interventions should happen earlier in their development, Jinger Cain said.
“They’re growing. They’re getting taller. They’re getting heavier. Their muscles are setting. Their bone plates are setting,” she said. “Literally every day that your child is not making progress, they’re falling further behind.”
The Galileo, developed by the German device maker Novotec Medical, mechanically stimulates the muscles in people who can’t move them using vibrations, said Marilyn Hamilton, who owns Carmel, California-based, STIMDesigns LLC, the only U.S. company that distributes the device. In Dylan’s case, his ankles would be held in proper alignment either using straps or people’s hands. The brain’s plasticity allows it to learn and relearn how to position the body, Hamilton said.
OHSU’s Russman said vibration will indeed loosen the muscles, but that would not carry over once the vibration stopped. For his cerebral palsy patients, he said he commonly recommends surgery, casting or Botox injections.
Jinger Cain said she’s thoroughly vetted all of those options and found none would work for Dylan. An orthopedic surgeon in Bend recently gave her a list of surgeries he felt would help Dylan, but she said he has a condition called adrenal insufficiency, which prevents his body from releasing hormones that protect one’s body under stress. She said surgery would be especially life-threatening for her son.
Russman said those hormones can be given artificially to people with adrenal insufficiency during surgeries. Jinger Cain said she’s aware of that but that the medication would not offer enough protection. She said Botox injections would be “excruciating” and the casts would prevent Dylan from improving his mobility while wearing them.
A handful of small studies have found vibration therapy improved mobility and, in one study, bone strength in cerebral palsy patients.
Researchers in South Korea found after using whole body vibration, children with cerebral palsy displayed “significantly better gait speed, stride length and cycle time.” The study, published in the journal Clinical Rehabilitation in 2013, also found the therapy strengthened two leg muscles below the knees. It was very small, however, involving only 30 children.
Researchers at Shriners Hospital for Children in Montreal randomly assigned 20 children with cerebral palsy to either only physiotherapy or physiotherapy plus vibration therapy. Those who received the vibration therapy increased their average walking speed by a median of 38 percent. There was no change in the control group. The study, published in the journal Journal of Musculoskeletal and Neuronal Interactions in 2010, concluded the difference was statistically significant.
Jinger Cain said there is no doubt in her mind the Galileo would help Dylan.
“This isn’t just an experiment for us,” she said.
‘I want it yesterday’
The Galileo is not cheap. Jinger Cain said the device costs roughly $8,300 for the vibrating base and another nearly $11,000 for a tilted table that’s used with the base. She’s trying to raise money to purchase the devices before Thanksgiving.
“I want it yesterday,” she said.
When Dylan was born, Jinger Cain, a real estate broker, said she had built up a healthy savings account. But after a few years, all of the therapies they tried cleaned it out, she said.
“To get where we’ve gotten, I’ve buried us in credit card debt,” she said. “My family can’t afford for me to keep doing that.”
She is launching a fundraising campaign in hopes of raising enough to buy the device. A local therapist has already committed $1,000, she said.
This, in addition to all of the equipment the Cains already own, would eventually allow them to launch a nonprofit to help other community members with similar disorders, she said.
“Other parents, I don’t think, realize that there is so much we can do for our kids,” she said.
— Reporter: 541-383-0304, firstname.lastname@example.org