|Diagnosis: Dandy Walker Syndrome
with spastic quadriplegic Cerebral Palsy|
Age at Onset: birth
Phillip seemed like a normal baby when he was born 14 years ago. But when he was around nine months old, his mother noticed he wasn’t crawling, rolling over or trying to stand like other infants his age were. Phillip’s parents took him to a specialist who said he was probably just developing late. But they knew something wasn’t quite right. It was a hunch confirmed by an MRI: their baby had Dandy Walker Syndrome and spastic quadriplegia Cerebral Palsy. Which meant his chances of walking were slim.
Dandy-Walker Syndrome is a congenital brain malformation that causes the progressive enlargement of the skull and slows motor development. In older children, the increased intracranial pressure results in symptoms like unsteadiness and lack of muscle coordination. Quadriplegic CP causes immobility in the arms and legs.
The moment Trien was given that prognosis about his son is one he’ll only dwell on briefly. “I didn’t know what to do, I didn’t know what think, I didn’t believe it,” he states before briskly moving on with his story. “But I am always hopeful.”
It’s Trien’s hope, combined with the scientific mind of a software engineer, that fuels his constant search for ways to help his son. His first move was to take his baby boy to Vietnam. “That’s where we’re from,” he explains. “I took him back for acupuncture. It’s too expensive here and not covered by insurance, so we returned to Vietnam for three months of aggressive treatment. We saw some progress …” But not enough to satisfy Phillip’s driven father.
“You have to be really aggressive and start treatment at a very young age. You have to stretch and exercise. You must start them young because the older they get the harder it will be to change the muscle tone.”
Trien is completely dedicated to conditioning Phillip’s muscles. “If tight muscles aren’t conditioned you get atrophy. And the doctor told us that atrophy will reduce his chances of walking even more—he’d be a wheelchair candidate. I didn’t like that.”
With what seems like the sheer force of his will and research, Trien hasn’t let that happen. “Since Phillip was young he’s had a walker and I insisted he use it. So now, he’s hardly on a wheelchair at all except when we travel long distances. Last year he started to walk by himself—not with a normal gait, but still. At first it was a couple steps; two or three and then he’d lose his balance. But he went from two or three to two hundred.”
And that was before Trien discovered the RT300 FES system—just imagine what he’s doing now.
“I found out about FES about six months ago,” he says. “We were working with a physical therapist on a device that stimulates a foot drop. It senses when the user raises his leg and it sends a signal to stimulate the muscle to lift it higher. We saw some results, but then the therapist told me there’s another option: a Restorative Therapies FES system that strengthens muscle groups that aren’t conditioned on the other device. I work for a medical device company so I understood the science behind this. It was what I’d been looking for.”
Phillip now uses the RT300 FES system twice a week at the Gillette Children’s Hospital. “We’ve seen constant improvement. At first it was very hard. But now he does a 45-minute session. He can perform at a higher resistance for longer. With the RT300 he’s walking even better, because it increases his muscle strength and that gives him more stability and endurance. I see the progress in his balance. The physical activity improves his muscle strength and tone."
thing about muscle strength is that it also creates tightness. So then you need
to stretch those muscles. You tighten a muscle and you relax it. You do that
multiple times like a rubber band, introducing different kinds of muscle memory
to the muscle. Over time, that becomes more permanent. Electrical stimulation
and stretching will eventually make the muscle become more and more normal.
That combination gives him a much better chance to recover, normalize his
Before he started with the RT300, Phillip needed help for transfers. Since his father discovered the Restorative Therapies technology, he’s been able to walk without his walker for two hours, transfer himself and stand for longer periods of time—an improvement that has helped significantly with his ADLs. His atrophy has lessened considerably from the RT300. The muscles are being conditioned and beginning to develop.
significant improvement Trien attributes to the RT300 is Phillip’s weight loss. “Kids with limited physical mobility don’t have a
chance for physical activity, so they gain weight. They need physical activity to stay healthy and
control their body. Phillip’s mood has improved too.” So has Phillip’s foot drag.
Because of the stimulation of the anterior tibialis, Phillip has started
picking up his foot as he walks."
His father, of course, is hopeful. “It helps. It still drags but it’s better. If we work with it consistently, I KNOW it’s going to get even better. It’s going help him to walk better. I’m sure of it.”
Phillip also has a
learning disability, so his father uses music to teach him. “I’m using it as a
channel to get him into learning. He likes ‘Let It Be’ by John Lennon. We sing
it again and again until the rhythm and the melody are part of us. He has some
problems with his fine motor skills, but he can strum the guitar and hit a
conga. He can learn the rhythms and be part of the music, and that will
eventually change his brain. Just like the RT300 is changing his body.”
“Restorative Therapies gives children like my son the opportunity to move muscles that have been hibernating, that haven’t had the chance to wake up. But once they do wake up, you discover they can move, they can learn, they can change, and the child has a better chance of carrying on an active life. I know the RT300 can make a big difference. See, I’m always hopeful.”