NEUROSCIENCE INSTITUTE
TAMING BOB
DEEP BRAIN STIMULATION LETS DJIMON HILL (FINALLY) RELAX
Meet Djimon
Djimon Hill’s right arm was so out of control that Djimon’s
family had to physically tie it down. Sometimes they’d pin it
beneath the tray on his wheelchair, where all day it would strain
to get out. Erika Cannely, Djimon’s aunt and co-guardian, gives
the arm a playful pat. “We call it Bob,” she says. “It’s got a
mind of it’s own.”
And in a way, it does: Djimon
suffers from secondary dystonia,
a kind of crossing of wires in the
basal ganglia, the brain’s center
for voluntary movement. It’s the
result of oxygen deprivatio n at
birth. Djimon’s heart stopped while
he was still in the birth canal and
took four minutes to get going
again; Djimon was born struggling
to control his movements. Muscles
don’t relax or contract as they
should. His legs won’t support
him; he has to fight his own
limbs. He eats constantly, but
due to the calorie burn of his
overtaxed muscles, has trouble
putting on weight.
Ironically, the muscles themselves
work perfectly well. In fact, kids
with dystonia are often very strong.
“He’s got some big guns right here,”
Erika jokes. “We’re dressing him,
we’re fighting him. It’s a fight just
to straighten out his arm. Lately, it’s
been easier.”
Lately, that is, since Djimon’s
Deep Brain Stimulation (DBS)
operation last year.
Basically a set of electrodes
implanted deep in the movement
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centers of the brain, DBS has
been a proven treatment for
Parkinson’s disease, another
impairment of the basal ganglia.
It has a dicier track record in
dystonia patients, often kids.
Led by neurosurgeon Aviva Abosch,
M.D., Ph.D., and supported by
ongoing research combining brain
imaging and clinical data, the
Pediatric DBS Program at Children’s
Hospital Colorado seeks to
maximize the benefits of pediatric
DBS by analyzing who it works best
for and why. It’s the only pediatricspecific DBS program in the Rocky
Mountain region and one of just a
handful in the United States. Djimon
was the program’s first candidate.
There was no guarantee that the
procedure would work.
But it was a chance.
“I wanted him to do it,” says
Daevion Hill, Djimon’s younger
brother, best friend, and de facto
interpreter since he was old enough
to talk — Erika calls him “the
Djimon Whisperer.”
“We went to the appointment where
Dr. Abosch explained everything,
and she didn’t pull any punches,”
Djimon Hill and his neurologist, Abbie Collins, M.D., share a chuckle at yet another of
Bob's hilarious jokes.
Erika recalls. “I was scared. But on
the way out, I heard Daevion tell
Djimon, ‘Do it! Do it!’”
The process would involve two
operations: one to implant the
electrodes and another to route
wires via Djimon’s neck to a
controller in his chest. Children’s
Colorado pediatric neurologist
and movement disorder specialist
Abbie Collins, M.D., now uses that
controller to remotely program
voltage levels for optimal effect, a
process Djimon goes through every
three months.
The effect was immediate: his legs
relaxed. He felt better. One of the
frequent downsides of DBS in kids
is that increased control over
muscle movement often coincides
with increased trouble
speaking and swallowing,
but Djimon’s speaking
and swallowing actually
improved. Even
Bob behaved.
Further programming has
yielded steady improvement,
and Djimon’s family is hopeful
that he may soon be able to
push his own wheelchair, maybe
even walk. Djimon is even more
hopeful: one day, he’d like to drive.
The DBS Program at
Children’s Colorado seeks
to maximize the benefits
of pediatric DBS by
analyzing who it works
best for, and why.
What kind of car? Djimon grins,
and the response comes through
Daevion with a wry smile. “Any car.”
“I read the other day they made a
car for a man with no arms or legs,”
says Erika. “I was like, see, Djimon?
Keep dreaming.”
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