Gillette Children’s Center for Pediatric Neurosciences
As pediatric neurologist Tim Feyma, MD, examines a patient’s imaging scan in clinic, he notices something that may be of concern. Fortunately, the structure of Gillette Children’s Specialty Healthcare’s Outpatient Clinic provides easy access for a consultation with a pediatric neurosurgeon working within the same clinic setting.
The structure of the Center for Pediatric Neurosciences at Gillette reflects its commitment to comprehensive teams. Neurologists, neurosurgeons and pediatric rehabilitation medicine specialists practice together in the same clinic, with immediate access to pediatric subspecialists in other disciplines. Members of the neurosciences team credit Gillette’s success to a spirit of collegiality fostered across specialized multidisciplinary teams with the knowledge, expertise and resources to evaluate patients, develop care plans and implement individualized strategies to maximize patient outcomes.
Internationally recognized for excellence in caring for children who have disabilities, Gillette is at the frontier of advancements both in pediatric neurosciences as a whole and in managing patients who have complex neurological conditions from childhood through their adult lives. Gillette’s Center for Pediatric Neurosciences treats patients who have a variety of conditions, including cerebral palsy, spina bifida, hydrocephalus, epilepsy, movement disorders, neuromuscular conditions, Rett syndrome and other conditions affecting the nervous system.
“The interaction I have with other neurologists, neurosurgeons and subspecialists at Gillette is a pleasure, and it definitely makes a difference,” says pediatric neurologist Randal Richardson, MD, whose neurology practice focuses on disorders of the peripheral nervous system. “We work closely together and seek input from each other. Equally important, these open channels of communication between subspecialties expedite patient care. When I refer a patient to one of our neurosurgeons, I don’t have to place a referral. I email an image or walk down the hall in clinic and have a discussion. I can talk with the patient and family the same day in clinic or call them the next day to talk with them about what I’ve learned and to make a recommendation. This saves my patient weeks of waiting; it’s just good patient care and customer service.”
Gillette focuses on functional pediatric neurosurgery.
“Our group of four fellowship-trained pediatric neurosurgeons and four neurosurgical nurse practitioners is the largest in Minnesota,” explains neurosurgeon Patrick Graupman, MD. “We treat complex neurologic disorders with the goal of improving and adding function to children’s lives. The functional treatments we provide include both implanted devices — such as deep brain stimulators [DBS] to treat movement disorders like dystonia — and neurosurgical procedures, such as selective dorsal rhizotomy for managing spasticity in patients who have cerebral palsy. When we are working with damaged nervous systems, surgical treatments are used to quiet nerves down or to unmask potential that was not being utilized because of a problem in the neuronal connections. We also offer selective peripheral nerve operations to relax a muscle by de-enervating its motor function. It’s a unique subspecialty. There are clearly functional neurosurgeons in the adult world, but we are starting to create a functional subspecialty in pediatrics.”
Introducing implanted device treatments to the pediatric population requires strict compliance with FDA requirements and extensive research to objectively assess outcome measures.
“We are the only institution in the Twin Cities that’s been granted an FDA HDE, or humanitarian device exception, to treat dystonia with DBS in pediatrics,” Dr. Graupman notes. “We track and measure outcomes rigorously. If you are adapting new treatments for pediatrics, you must have measurable data points, report all complications and track outcomes objectively.”
Gillette’s Complex Movement Disorders Clinic is conducted as a collaborative clinic with pediatric neurologist Dr. Feyma, physical medicine and rehabilitation specialist Mark Gormley, MD, and Dr. Graupman working as a team to evaluate patients who have movement disorders.
“With dystonia patients, we always begin with medical and other noninvasive interventions,” Dr. Feyma explains. “If those options aren’t helpful, Gillette’s additional unique strength is in technology treatments like DBS, which uses a device developed by Medtronic. DBS has been used for some time to treat Parkinson’s disease, but we are on the frontier of using this device in pediatric medicine. Some complex movement disorders are responsive to DBS, and others are not. At Gillette, we have the capacity to gather details about the underlying diagnosis that help us pinpoint the dystonia patients who might be helped.”
Patients qualifying for the DBS implant are severely impaired, and they typically don’t have other options. Their eligibility is determined through a rigorous evaluation protocol. In the past year, Drs. Graupman and Feyma have implanted eight DBS devices. The surgery requires both a neurosurgeon and a neurologist to implant the device and guide electrodes into the correct areas of the brain. The device is connected via internal wire to a battery pack in the patient’s chest. During the first three months following surgery, the device is fine-tuned to deliver impulses of energy deep into the brain.
“So far, we’ve seen this therapy help every patient, though we aren’t able to predict the degree to which individual patients might respond,” Dr. Feyma explains. “The electrodes are placed in the part of the brain where excess excitation seems to cause excessive and uncontrolled movements. We hypothesize that the stimulation interferes with abnormal signals causing the movement disorder.”
Looking forward, Gillette’s neurosurgical team is following the data for treatment of secondary dystonia with DBS. Complex movement disorders in general, and in the cerebral palsy population specifically, are a very common problem. Currently, about 100 cases of secondary dystonia have been treated with DBS worldwide. Gillette’s team is hoping that, as outcome data grows, DBS may provide a new option for cerebral palsy patients.
The Evolution of Surgical Procedures in Pediatrics
“Before there were pediatric subspecialists, we didn’t treat children aggressively with surgical interventions,” explains neurosurgeon Michael Partington, MD. “We waited until they were adults. As pediatric subspecialties developed, we became more aggressive about both the medical and surgical management. We have learned that, with many conditions, doing surgery earlier — before complications develop — is better than waiting until more serious problems arise.”
Gillette’s Advanced Imaging Center utilizes positive distraction features, such as high-definition video, ambient lighting and music, to provide a calming effect for pediatric patients undergoing imaging studies. These features have demonstrated a significant increase in the completion rate of imaging studies for children.
Gillette’s team is always balancing the technologies and treatments available with the multilevel protocols developed through handling large numbers of complex cases.
“Appendicitis and asthma can have such straightforward management that a care path can be used for many admissions,” Dr. Partington says. “We have the opposite situation. Cerebral palsy [CP] can present in multiple ways. For every 100 children with CP, one care path may work for 30 or 40 of them. The other 60 to 70 have different disease patterns. One child may be cognitively normal with spastic diaplegic CP and no other problems. Another child may have more extensive involvement and require a different care approach. Handling thousands of these children informs our pattern recognition and gives us the ability to shift between less clearly defined algorithms, making it easier to recognize the pattern in the next child.”
“We take pride in being the Twin Cities’ only nationally ranked children’s hospital in pediatric neurology and neurosurgery,” Dr. Feyma says. “Our neurologists offer comprehensive care for children, teens and adults who have conditions including epilepsy, neurologic issues of the neonate, brain injuries and neuromuscular conditions. With a group that includes nine pediatric neurologists and four nurse practitioners representing a wide range of deep expertise, we are unique in having a large concentration of providers with the ability to manage complex neurologic conditions. We team with sleep medicine specialists who collaborate to help manage issues related to sleep and other nocturnal events, such as seizures. These collaborations improve the health of the child and quality of life for the entire family. Having a large group of subspecialists within the Center for Pediatric Neurosciences gives our clinicians the ability to subspecialize and to collaborate with their colleagues, teasing out answers for the difficult cases we routinely handle.”
Neuromuscular disorders are among the more unique conditions treated at Gillette, and they are the focus of Dr. Richardson.
“I work primarily with children who have genetic disorders of the peripheral nervous system,” he explains. “The vast majority of genetic diseases don’t have a cure, so we concentrate on an accurate diagnosis and on instituting the appropriate mix of supportive therapies. That is where coordinated care is so important. I figure out the underlying genetic cause of the problem, provide information to the patient and family, and refer to pediatric subspecialists, rehabilitation therapists and assistive technology practitioners as the patient needs them.”
“Our team treats a variety of complex neurologic conditions, with the goal of improving and adding function to children’s lives.” — Patrick Graupman, MD, pediatric neurosurgeon
Duchenne muscular dystrophy is the classic and most common pediatric genetic neuromuscular disorder. Patients often use wheelchairs before the age of 12, and they become progressively weaker until death in the teenage or young adult years. Disease weakness extends beyond the skeletal musculature to the diaphragm and heart, so Gillette’s comprehensive Neuromuscular Clinic includes pulmonology, rehabilitation medicine with physical and occupational therapists, neurology, and cardiology.
“Patients come in once every six months for daylong interdisciplinary appointments,” Dr. Richardson explains. Gillette then works with families to define the most appropriate interventions for improving quality of life and physical function.
“Although this is a difficult disease, there is hope on the research horizon,” Dr. Richardson continues. “Duchenne muscular dystrophy has the most advanced research in genetic therapies, such as exon-skipping therapy to bypass the abnormal portion of the gene. Our hope is that one of these therapies will convert Duchenne muscular dystrophy to the milder phenotype, Becker muscular dystrophy. The patient would still have weakness, but the disease would progress more slowly and might not lead to early death. There are 12 different types of therapies under investigation now. It will take time, but there’s hope.”
At Gillette, every member of every team focuses on what he or she does best, relying on colleagues to use their own expertise to best manage patients. Drs. Feyma and Graupman remember their first DBS patient.
“He was very depressed and very locked into his body. He couldn’t steer his wheelchair and couldn’t eat anymore,” Dr. Feyma says. “He was in a very difficult place. After surgery, it was great to see the change in him. He can now drive his wheelchair and eat independently, and it’s a joy to see the pleasure he takes in life. This treatment returned a level of function to him that makes his life meaningful again. And that’s what matters.”
Gillette physicians can be contacted through Gillette’s One-Call Access number, 651-325-2200, or toll-free at 855-325-2200.