DOWNEY – Each year, 45,000 children in the United States are diagnosed with epilepsy. For approximately 20 percent of these kids, the seizures are unresponsive to even a cocktail of anti-epileptic drugs, with some children left seizing hundreds of times a day. If the seizures come from one side of the brain, then a hemispherectomy—a drastic procedure where one-half of the brain is removed—is used as a last-ditch attempt to stop them.
Performed on children sometimes as young as two months old, the procedure leaves the child partially blind and partially paralyzed on the opposite side of their body. They require years of physical, speech and other therapies. Without regular, intensive rehabilitation, many of these children develop scoliosis and other physical impairments, including almost complete paralysis of the hand.
Surprisingly, there has been no single facility in the world with an intensive, modern rehabilitation program specifically targeted to help a child after hemispherectormy surgery—until now.
The RoboCamp at Rancho! program, which will be held from July 14-25 on the Rancho Los Amigos National Rehabilitation Center campus, will allow seven participants to experience intensive robotic therapy, group therapy, peer mentoring, recreational therapies, and yoga.
“The camp promises to deliver cutting-edge, robotics-assisted therapy to these kids in a fun, camp-like atmosphere rather than a sterile hospital environment,” said Rancho Chief Medical Officer Mindy Aisen, MD. “By grouping children with similar diagnoses, kids also get to socialize and make friends with children who are just like them. Housing will be provided for families on the Rancho campus.”
“With world-class clinicians trained to target the unique physical challenges faced by these kids, Rancho is the natural choice for this innovative and critically important therapy program,” said Dr. Aisen “The Rancho Research Institute Foundation has worked for nearly a year with The Brain Recovery Project of Pasadena, scouring the nation to find kids who would benefit most from Robocamp at Rancho!“
Here are profiles of six of the children who have been selected to attend the inaugural robotics camp:
At birth, Anna was diagnosed with Sturge Weber Syndrome, a rare congenital neurological and skin disorder at birth, often characterized by a port wine stain on the face. She started having seizures at three weeks old. For years, her patents battled to control her seizures, but to no avail.
In January 2013, she had the right hemisphere of her brain removed. Today, Anna loves to read, go horseback riding, and swim when the weather is warm enough. She and her parents are hopeful that her balance, hand function and walking ability will improve at the camp. Anna also hope to make new friends “just like her”.
Born with an extremely rare brain deformity where one half of the brain is enlarged and deformed, Gibson began having seizures at just three years of age. A year later, the left half of his brain was removed at Ronald Reagan-UCLA Medical Center by neurosurgeon Dr. Gary Mathern.
Today, Gibson is 12 years old and attends Raintree Montessori, where his mom is a teacher. He loves all things Elvis. Although he walks with a limp and is unable to use his right hand, his family hopes these challenges will improve with the use of the robotics at Rancho.
Born with a brain malformation called cortical dysplasia, Hannah began having seizures just 48 hours after birth. A cocktail of three powerful anti-epileptic drugs failed to stop her seizures, so at the tender age of 2 ½ months old, the right half of Hannah’s brain was removed in a final attempt to stop the seizures.
Today Hannah is a vibrant 10-year-old fifth grader who is fully mainstreamed in a regular classroom with supports. She attends class just like any other kid. She gets all A’s and B’s and loves to sing, dance and play on her iPad.
And yet Hannah could do so much more. She and her parents hope that the intensive therapy she will receive at RoboCamp at Rancho! will help her make gains that have been impossible with the therapy that is available near her home in Minnesota.
Josie was a typically developing child until her first seizure at age 2. Diagnosed with Rasmussen’s encephalitis, a rare neurological condition that causes uncontrollable seizures, she had the right hemisphere of her brain removed at age four.
Today Josie enjoys a peaceful life in Iowa with her parents and siblings. Josie and her parents hope that RoboCamp at Rancho! will help her regain some functionality of her left hand and improve her balance and gait.
Sasha developed catastrophic epilepsy, with some seizures lasting as long as three hours, as a result of failed shunt surgery at 18 months old. At the age of six, the right hemisphere of her brain was removed to stop the seizures.
Sasha is now a vibrant 10-year-old “tween” who loves music, dancing, and animals. She is a fantastic little girl with an “old soul” and a comedian at heart. Sasha and her mom hope the robotics-assisted therapy will help her regain some functionality in her left hand.
Jesse was a typical five-year-old kid who enjoyed spending lazy days on her family’s boat with her brothers, until a single seizure changed everything. Quickly rocketing to more than 50 per day, the seizures soon caused her to regress both physically and cognitively.
Diagnosed with Rasmussen’s encephalitis, a rare neurological disorder that causes uncontrollable seizures, Dr. Ben Carson of The Johns Hopkins Hospital removed half of Jesse’s brain only one year later when several anti-epileptic drugs failed to stop the seizures. Today Jesse is in fifth grade and attends a regular school with all her friends. Jesse and her parents hope that she will improve her walking gait and speed at RoboCamp, as well as gain some function in her hand so she can use it to hold open a favorite book or pull on a sweater. And perhaps one day she will be able to beat her brothers at their favorite video game!
“After all the Rancho doctors donate their time, the actual cost of RoboCamp at Rancho! will be $4,500 per participant,” Dr. Aisen said. Each family will be asked to pay $500. The remaining funds must be raised by the Rancho Research Institute Foundation.
“We know this effort is important, because we have substantial evidence that these therapies are helpful,” she said. “But now we need to know more about quantity and timing of therapy, and how best to combine robotics with other rehabilitation and pharmacologic therapies. We are working on hardware design adjustment, and on programming virtual reality environments to best deliver robotic physical and social therapy.”
The main objective of holding a two-week, on-site robotics camp for hemispherectomy patients is to focus on the current state of scientific knowledge with an aim toward advancing clinical practice by providing additional evidence to inform guidelines for recovery.
“Data derived from the impacts of the program will advance our understanding of the central nervous system as well as human growth and development,” Dr. Aisen said. Clinical Rancho staff participating will include neurologists, neurosurgeons, epileptologists, neuroscientists, pediatricians, nurses, physical, occupational and speech therapists, neurospychologists and others.
“After evaluating the results of the world’s first hemispherectomy summer camp, we would like to expand the program to analyze its effects on patients with Autism, cerebral palsy and other developmental disorder,” Dr. Aisen added. “We believe this work will lead to breakthroughs so that Rancho’s Patient-Centered Medical Home may soon provide the advanced services necessary to optimize independence, neuro-development, health and happiness for people like these wonderful kids with developmental disorders and those who love them.”
To help support the RoboCamp program, or for more information, call the Rancho Research Institute at (562) 401-8111 or Dr. Aisen’s office at (562) 401-7161.
Published: May 29, 2014 - Volume 13 - Issue 07