John Garcia, 12, stood at the foot of his bed of his Santa Fe home, sorting video games into two piles — keep and sell. He opened a plastic box with both hands to make sure the right game was inside. Donna Quintana, John's mother, watched. "He used to use his teeth to do that," she said.
John has spastic hemiplegic cerebral palsy, which originated before birth but went undiagnosed for more than a year. Dysfunction of motor neurons in the left side of his brain causes difficulty using the right side of his body.
"He had trouble crawling — he would fall to his right side. The doctor said, 'He'll grow out of that,' " Quintana said. "When he started walking, he held his right arm up and dragged his right foot. The doctor said, 'He'll grow out of that,' but I said, 'Bull.' "
Her instincts were confirmed through John's first brain scan in Albuquerque when he was about 14 months old. But she didn't get a full understanding of his diagnosis — cerebral palsy — until she began taking him to occupational and physical therapists through New Vistas in Santa Fe, which coordinates services for children with disabilities.
According to Children with Disabilities, 1.2 to 2.4 babies born per 1,000 have cerebral palsy. Each year, about 5,000 babies and 1,200 to 1,500 preschoolers are diagnosed with the disorder. Typical signs include lack of muscle control and movement. Although cerebral palsy is not progressive, its effects change over time due to growth and the shortening of muscles and tendons that can occur when movement is limited. There is no cure.
Quintana described John's cerebral palsy as mild, but he disagrees.
"It sucks," he said. "I can't use my right hand, and I can't walk right."
Despite this, in December he will test for his black belt in tae kwon do. His parents believe the martial art, along with several years of therapy, helped John increase the use of his right side. There is a therapy, however, that could push John's progress even further. Instead, for now he is making a sacrifice for science.
John is taking part in a study on the use of constraint induced movement therapy, or CIMT. Six children received the therapy while John was among three who didn't. He is in what's called the "control group."
"It's hard to find a control group because everyone wants the therapy," said Dr. Pat Burtner, a University of New Mexico occupational therapy professor and a researcher in the study.
Quintana doesn't seem worried her son hasn't had CIMT— she just wanted her family to be involved. "I'm nosy about stuff like that," she said. "I told (John's doctor) we'd really like to participate. If we can benefit other families, that's wonderful."
The therapy involves restricting movement in a child's strongest arm with a cast or mitt so the child must use the affected side.
This practice is more commonly used with adults with strokes and other brain injuries. Other studies have shown the effectiveness of CIMT with children, but this is one of the first to use functional magnetic resonance imaging, or fMRI scans, and a high number of daily tasks such as bathing, dressing and eating.
The six children who received therapy did so four hours a day for two weeks, and all of them improved the use of their affected hands. Burtner looked at the children's strength and dexterity while Dr. John Phillips, a child neurologist and the Mind Research Network medical director, focused on neuronal changes visible through fMRI scans.
Kelly Gunn of Albuquerque said her son, Jared, 7, saw "absolutely amazing" results from the therapy after participating at ages 3 and 5.
"To this day, he shows improvement," Gunn said. "We look back at home videos and watch him open presents. He would hold things with his right hand, but he didn't use his fingers. Now he uses his whole hand. The improvement stayed with him."
Phillips said the imaging allows researchers to see where brain activity is happening through changes in blood supply. The assumption is that when oxygenated blood flows to an area, it indicates neuronal activity in that location. The magnetic activity of the oxygenated blood is picked up by the scanner and made visible to researchers.
Phillips believes this form of imaging may change rehabilitation, allowing therapists to gauge the therapy's effect and develop new therapies based on an understanding of the neuronal behavior of a disorder and how it reacts to different situations.
Kristina Keenan, a researcher in this study and pediatric occupational therapist at Albuquerque's Kidpower, said CIMT is still considered a new therapy with children. It is used more often in summer camp settings for children with disabilities than in one-on-one therapy situations. She believes showing progress can occur with intensive therapy over two weeks will encourage insurance companies to cover CIMT, allowing more therapists to offer it in a clinical setting.
John and his family have been working with the Mind Research Network in Albuquerque and The University of New Mexico for the past five months.
During 15 visits with John, Coyle Domina, a UNM occupational therapy student, measured the boy's grip and pinch strength and timed John doing activities such as assembling pop-beads and picking up blocks. "We should see a big difference between my data and (data taken from participants in the therapy group)," Domina said.
The fMRI results of the six therapy group participants have all shown increased brain activity and neuronal reorganization, otherwise known as plasticity.
The control group was scanned within a similar time period. Those scans have not been analyzed yet, but the hypothesis is there will be no significant changes between earlier and later control group scans.
As result of the study, Quintana's parents would like to see John get the treatment when his role in the control group is over.
"If it was up to me, yes (I would pursue constraint induced movement therapy for John)," his mother said. "I just think he needs to work a little bit harder on using both hands and have more confidence. It would help with his insecurities."
John's last fMRI scheduled this month at the Mind Research Network will mark the end of the study, and none too soon. He's not wild about being encased in the scanner for an hour at a time.
"It is very long and very boring," he said. "I just think about when I will get out."
John's father, also named John Garcia, said, "He has trouble with MRIs. It's so tight in there, and it's hard to move just like they want him to."
But John has endured much worse. When he was younger, kids picked on him for the way he moved. He has a limp.
"It kills me to see (my son) struggle. The bullies. When John was in fifth grade, we had to call the cops two days in a row. They beat the (crap) out of him," Quintana said. "John can be a comedian — make fun of everything. He's had a rough time with bullies since kindergarten."
Quintana's oldest son, Christopher Romero, 22, defended John on occasion.
Now a seventh-grader at The Academy for Technology and the Classics, John is doing well. Quintana said he has to write with his left hand even though he's probably right-handed. Since he struggles with writing, he often types his work on a computer.
John said he likes school and that eighth period is his best class.
"I go home eighth period," he said. "There are only seven periods."
For John's mother, this month's brain scan gave her insights she didn't have all these years. On Sunday, Phillips pointed out the large left ventricle and noted that a prenatal bleed likely occurred in that location. The position of the lesion determined that John's cerebral palsy would leave him with physical, but not cognitive, damage.
The effects of cerebral palsy vary from person to person depending on what part of the brain is affected. For example, physical impairments can be mild to severe, and people can also have mental retardation or difficulty speaking.
"Nobody ever told me that," Quintana said. "It is a wonderful study — we have a better idea of what really happened. When he was little, someone drew a picture for me and told me he had right hemiplegia, but I didn't know what that was."
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