Two years ago, Adam Leon, 16, couldnt raise his right arm.
He has cerebral palsy caused by a stroke before or just after birth that left his right arm and wrist stiff.
Then in January 2012, Adam started getting Botox treatments from Dr. Roberto Lopez-Alberola, a pediatric neurologist at the University of Miami Miller School of Medicine. Every three months, Lopez-Alberola injects the toxin into the affected muscles using electromyography to hear the nerves firing and target the right ones.
Actually its the nerve were paralyzing. The muscle that was previously very tight or spastic now becomes relaxed, Lopez-Alberola explained.
They put electrodes on my upper arms, and then the doctor injects the syringe full of the Botox, Adam said. The machine makes noises. [The targeted muscle] sounds like static, Adam said.
The injections, coupled with intensive physical therapy and workouts in a Kendall gym with a personal trainer, have enabled Adam to extend his arm.
I can carry groceries, I can turn doorknobs, it improves my balance, Adam said, adding that it takes a lot of brain power to learn to work unused muscles.
Before, I felt low. My arm was so stiff and everyone would look at me, but now its getting better, said Adam, who specializes in the mile run. He hopes to continue the treatment as long as it takes to get equality between my left and my right arms.
Adams therapy is one of several innovative treatments for cerebral palsy in South Florida.
Unfortunately, the Botox treatment, although its been used for over 15 years, it doesnt even yet have the FDAs approval for children. Yet in the rest of the world, its pretty much standard, Lopez-Alberola said. The injections, along with physical therapy, Lopez-Alberola said, have made a dramatic impact on the quality of life.
Lopez-Alberolas patients range from age 2 to early 20s. I have kids that play baseball, ride a bicycle, play gymnastics, he said.
Thomas Blood is hoping his daughter Ezabella, 6, will be able to walk and run with her friends one day. He was trying to arrange for surgery in St. Louis when he learned that Dr. Dean Hertzler was doing the same intricate surgery at Joe DiMaggio Childrens Hospital in Hollywood.
Ezabella, whose cerebral palsy affects her legs, had a selective dorsal rhizotomy in February in which a two-inch incision is made at the end of the spinal chord to expose the nerve rootlets that control the legs. With a microscope and a team of neurophysiologists, Hertzler examines each of the individual nerve fibers to figure out which of the sensory nerves are misfiring and cut them out.
We separate the bundles and test each nerve ending, Hertzler said. Usually because of the brain damage that has occurred from perinatal issues causing cerebral palsy, these nerves never formed normally so they have these very abnormal hyperactive circuits that are constantly firing and causing really spastic, increased muscle tone, Hertzler said.
The surgery, Hertzler said, can change a kid who has trouble just walking across the room because their legs are so spastic to someone who can walk almost normally.
Before their legs are almost locked into a posture thats very hard to move. After surgery you can freely move and bend their legs, Hertzler said.
In about half the patients, Hertzler has found the surgery relaxes the whole bodys tone, making the arm muscles more pliable as well.
The surgery is followed by intensive physical and occupational therapy beginning with several weeks in the hospital to get them moving with a more normal pattern than they were before the surgery, said Dr. Laura Wilner, a doctor of physiatry who directs Ezabellas rehabilitation.
Now her father brings her to therapy four days a week.
She is able to walk without the walker and weve reduced the bracing to one [leg], Wilner said.
Before, Ezabella would walk on her tippy toes, her sense of balance was completely off and she tripped a lot, said her dad. Now she has a more fluid motion. She stands upright, Blood said.
The surgery is not a cure for cerebral palsy, but for the right selected children, it eliminates one of the major hurdles they have, which is the muscle spasticity, Wilner said.
Children with cerebral palsy are among the patients Dr. Fernando Branco treats at the Brucker Biofeedback Center at the Miami Jewish Health Systems.
What is different about this use of biofeedback, Branco said, is how were targeting muscles.
After intense evaluations to see which muscles are working, we focus on muscles that are working but could be working better, Branco said.
You cant fix nerves, obviously. What you can do is retrain whats left. You can change how you do a function with the muscles you do have, Branco said.
An electrode is put on the childs skin on top of a muscle. When the muscle contracts, the child sees a jump on the computer screen. Throughout the session with two therapists, one managing the patient and one managing the computer, the child see the muscles moving as she follows the therapists commands.
When you visually send a signal, its feeding your brain, Branco said.