potential A publication of Kennedy Krieger Institute
Fall | Winter 2017
Big Man on Campus
Learning & Thriving with Autism
Surgery for Mild Cerebral Palsy
Standing Up, Reaching Higher
Helping Kids Get Their Lives Back
We are all born with great
Shouldn’t we all have the chance to achieve it?
A publication of Kennedy Krieger Institute
Fall | Winter 2017 Volume 17, No. 2
INSPIRING POTENTIAL Mighty Little Luke For 2-year-old Luke, who suffered a brain injury after nearly drowning in a pond, giving up isn’t an option.
Letter from our
President At Kennedy Krieger Institute, we welcome families from around the world seeking care for their children. This month, read about Karam (page 6), a little boy from Syria with an extremely rare disease; Mikey (page 8), a Maryland teen with autism; and Nathaniel (page 4), an 8-year-old with cerebral palsy, one of the first conditions ever treated at the Institute. Karam and his parents moved to Baltimore so our specialists could determine and provide the best course of treatment for him. Mikey is thriving thanks to his hard work, his family’s support, and the interdisciplinary education and therapeutic treatment he’s receiving while attending Kennedy Krieger schools. And Nathaniel is walking better than ever after undergoing one of the advanced neurosurgical procedures we offer to help individuals with cerebral palsy live full and active lives. Recently, we hosted our first-ever summit for families from around the world with children who’ve been diagnosed with the debilitating SYNGAP1 genetic disorder, a type of autism. Our neurogenetics experts shared updates about the latest research we’re leading to enhance our understanding of the disorder and ultimately improve the future for those with this syndrome. I was so inspired by what our researchers, clinicians and other specialists are doing to help these families—and that’s a feeling I’ve experienced over and over during the 30 years I’ve been honored to lead this extraordinary organization. I couldn’t be more proud of the progress the Institute has made, and the lives it has improved. Your support is an essential component of our progress. Thank you so much for all you do to help us transform children’s lives. Wishing you the happiest of holiday seasons, Gary W. Goldstein, MD President and CEO
Great Strides A special surgery has Nathaniel, who has cerebral palsy, walking better than ever—and riding a bike, too.
Bravo, Karam! Karam and his parents moved halfway around the world so Karam could be treated at Kennedy Krieger.
Big Man on Campus Ninth-grader Mikey, who has autism, thrives on the individualized educational programming his Kennedy Krieger teachers provide.
RESEARCH FRONTIERS Herbal Drug Brings Hope A drug meant to treat the debilitating seizures of Sturge-Weber syndrome has performed well in a clinical trial at Kennedy Krieger.
PROGRAM SPOTLIGHT Conquering Chronic Pain An interdisciplinary team helps kids and teens suffering from chronic pain get their lives back without narcotics.
IN MY OWN WORDS Giving Back the Gift of Learning A teacher and former fellow at Kennedy Krieger gives back to the community that supported her as a child.
NEWS BRIEFS & EVENTS Kennedy Krieger in the news and upcoming Institute events
POTENTIAL CREATIVE SERVICES MANAGER
Harry Bosk, Brian Schneider and Robin Sommer
DIRECTOR OF MARKETING
Nina K. Pettis
Stacey Bollinger PUBLICATION INQUIRIES
443-923-7330 or TTY 443-923-2645
For appointments and referrals, visit KennedyKrieger.org/PatientCare or call 888-554-2080. Potential is published by the External Relations Department of Kennedy Krieger Institute, 707 North Broadway, Baltimore, Maryland 21205. Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Kennedy Krieger Institute provides care that preserves cultural, psychosocial, spiritual and personal values, beliefs and preferences. Care is free from discrimination based on age, race, ethnicity, religion, culture, language, physical or mental disability, socioeconomic status, sex, sexual orientation, and gender identity or expression, including transgender. We encourage patients and families to become active partners in their care by asking questions, seeking resources and advocating for the services and support they need. Email PotentialMag@KennedyKrieger.org to update your contact or mailing information. If you do not want to receive future communications from Kennedy Krieger Institute, you may notify us by emailing Unsubscribe@KennedyKrieger.org or visiting KennedyKrieger.org/Unsubscribe. © 2017, Kennedy Krieger Institute
On the cover: It’s a long bus ride to Kennedy Krieger High School for Mikey, but he loves learning, and he thrives on the routine of the school day.
Visit PotentialMag.KennedyKrieger.org for more inspiring stories, news and updates.
For 2-year-old LUKE,
giving up is not an option. y the time his parents found him lying face down in a koi pond, Luke had been without oxygen for at least 15 minutes.
While waiting for an ambulance, Ashley gave her 2-year-old son CPR. About 15 minutes later, Luke’s heart started up again. A helicopter flew him to a nearby hospital. Upon arrival, his little body was only 86 degrees F. He was seizing and “cyanotic to the core,” Ashley says. But at the hospital, Luke stabilized, his seizures stopped, and “we went from talking about organ donation,” Ashley says, “to next steps.” Medics transferred Luke to Kennedy Krieger Institute on April 19. The brain injury he’d received in the pond due to a lack of oxygen had left him as helpless as a newborn baby, but his parents, doctors and therapists refused to give up hope that he could get better. By merely surviving what he’d been through, Luke— always a spunky kid, Ashley says—had already demonstrated that he was a fighter. Luke’s therapists’ initial goal “was to make him comfortable—just getting his arms and legs to straighten out was difficult,” Catherine Syretz, his inpatient occupational therapist at Kennedy Krieger, explains. They also wanted to train Luke’s parents in administering his therapies at home, several hours away. “But Luke did better than we thought he would,” Syretz says. With a few weeks of therapy and stretching, Luke was moving his arms again, tracking moving objects with his eyes, turning toward sounds,
rolling over, and swiping at toys. Speechlanguage pathologist Kathleen Brady worked with Luke on chewing, imitating sounds and turning his head toward the sound of a favorite musical toy. Overseeing his progress and the development of his care plan was his attending physician, Dr. Suzanne Rybczynski, medical director of the Institute’s Rehabilitation Unit. By the time Luke left Kennedy Krieger, two months after the accident, he had recovered a full range of motion in his upper extremities. And Syretz had even worked with Luke’s older siblings, too, to help them learn how to play with their baby brother again in a way that would help him recover.
“We didn’t even know he would smile again. The therapies Luke received at Kennedy Krieger were the best thing for getting his brain to wake back up.” – Ashley, Luke’s mom
Since then, Luke has continued to progress. Working with community therapists and his parents between outpatient visits to Kennedy Krieger, he’s started sitting up on his own, taking steps in a walker, eating soft foods and swallowing liquids, and enjoying his favorite songs and TV programs. And he’s started smiling and laughing—and saying “mama” and “dada.” One day last August, Luke opened his mouth on his own to eat the yogurt his mother was feeding him. Five months after nearly drowning, he sat up on his own, placing his hands down on the floor beside him to hold his back up. “He’s probably the strongest person I have ever met,” Ashley says. “He doesn’t realize that he could give up—he just keeps on trying.” – LT Visit KennedyKrieger.org/ RehabUnit to learn more about Kennedy Krieger’s inpatient Rehabilitation Unit. Pictured (top to bottom, left to right): Luke; Luke with physical therapist Kelly Fox (left) and occupational therapist Catherine Syretz (right); Luke and his parents, Ashley and Joel; Luke and Dr. Suzanne Rybczynski; Luke when he was an inpatient at Kennedy Krieger; Luke.
strides After spinal surgery followed by a year of intense physical therapy, Nathaniel is walking better than ever.
his past summer, 8-year-old Nathaniel went to the beach. Running along the surf, kicking up sand and splashing in the water, Nathaniel would have seemed, to a passing stranger, like any other kid having fun.
But it wasn’t an ordinary beach trip. For the first time, Nathaniel was playing in the water without having to be extra careful not to fall down. Nathaniel has cerebral palsy. The condition affects his legs and feet, making them stiff. Up until a special surgery he had a little more than a year ago, he would occasionally have difficulty straightening out his legs; his ankles, especially the left one, didn’t always bend. Without leg braces, he’d walk on tip-toe— a little on his right, more so on his left, with his left foot often turned in. He couldn’t run as fast as his friends. But the surgery, called a selective dorsal rhizotomy (SDR), which he had through Kennedy Krieger Institute’s partnership with The Johns Hopkins Hospital, has him walking better than ever now—and running, jumping and skipping, too. 4
Special Surgery When Nathaniel was 6 months old, he began physical therapy for delayed motor development. He was diagnosed with cerebral palsy shortly after that. His condition is mild. He’s been able to walk independently since he was 2 years old, with leg braces— which come up to a couple inches below his knees—for stability. At night, he wears stretching braces (about as long as the leg braces) to keep his legs stretched out and his ankles flexed.
Having cerebral palsy has never really bothered Nathaniel. He’s a member of the Cub Scouts and enjoys swimming, camping, hiking, playing video games, building with Lego bricks, playing with his friends, and reading—“Harry Potter” books are among his favorites. His unflappable spirit and mild condition, combined with his age—the surgery works best for children between the ages of 4 and 8—made him a good candidate for SDR, noted pediatric nurse practitioner Colleen Lenz during one of Nathaniel’s twice-yearly evaluations at Kennedy Krieger’s orthopedic clinic nearly two years ago. SDR is a surgery that can help relieve stiffness—also known as spasticity—in the legs and feet of children with mild cerebral palsy. Lenz referred Nathaniel to the Institute’s spasticity clinic, where the interdisciplinary team of Lenz, pediatric neurosurgeon Dr. Shenandoah Robinson, orthopedic surgeon Dr. Ranjit Varghese, physical therapist Janice Laux and Dr. Frank Pidcock, the Institute’s director of rehabilitation, evaluated Nathaniel and recommended him for surgery with Dr. Robinson, one of only a handful of surgeons in the U.S. performing this delicate procedure.
Both Heels on the Ground For a few weeks in early fall 2016, Nathaniel wore ankle casts to loosen up his muscles and tendons before the surgery. Then, during the four-hour surgery in November of that year, Dr. Robinson snipped the nerve rootlets at the base of Nathaniel’s spinal cord that had been sending spastic signals to his leg muscles, telling them to be stiff. The surgery left a small scar on Nathaniel’s lower back. For the first three days after surgery, Nathaniel had to lie flat on his back. On the fourth day, he stood up and walked a few steps. He was slightly hunched over and in some pain, but for the first time in his life, both of his heels were meeting the ground. “When we told him that, a great big smile spread across his face,” says his mom, Jill. Those were all the steps Nathaniel was allowed to take at that time. He spent the next seven weeks in Kennedy Krieger’s inpatient rehabilitation hospital, doing intensive physical and occupational therapy exercises for up to three hours a day, six days a week, gradually learning how to walk with a normal gait pattern. Left, top: Nathaniel and his mom, Jill. Left, inset (clockwise, from left): Dr. Frank Pidcock, pediatric nurse practitioner Colleen Lenz, Dr. Charles Silberstein, physical therapist Janice Laux, Dr. Ranjit Varghese, Nathaniel and Dr. Shenandoah Robinson. Above, left: Nathaniel walks on a special mat that records his gait on a computer. Above, right: Nathaniel practices walking with physical therapist Jason Benincasa.
Physical therapy consisted of activities like strengthening leg muscles in specific ways, stretching legs and feet, and walking a little more each day, building up to using a treadmill, hopping and jumping, climbing stairs, turning and stopping, kicking a ball, and doing obstacle courses, explains Laux, one of the managers within the Institute’s Physical Therapy Department. One day, Nathaniel found he could flex his ankles and point his toes to the ceiling—he’d never been able to do that before. A few weeks later, he walked across the therapy gym, a heel striking the ground at the beginning of every step, his stride long, his toes pointing straight ahead. Nathaniel’s stay at Kennedy Krieger coincided with the holiday season, observed at the Institute with special games and activities, donated gifts distributed almost every day, and a trip to the Institute’s famed Festival of Trees, in addition to outings to places like the National Aquarium and Dave & Buster’s. Despite his rigorous therapy routine, “if you ask Nathaniel, he’ll probably tell you it was his favorite Christmas ever,” Jill says. After Nathaniel went home, he completed another 10 months of intense physical therapy, both at home and with a local therapist, as part of his recovery and rehabilitation. Today, he still wears leg braces, but he walks and runs about as well as any other kid his age. Sometimes he even wears short ankle braces, which give him extra mobility for things like climbing on the jungle gym and learning how to ride a bike—an activity now possible thanks to his newfound ankle flexibility. A year after surgery, to celebrate his hard work and new stride, he and his family visited Legoland in Florida. When he got back, he started taking a martial arts class—it’s like physical therapy, but a little more fun, and with friends.
“Kennedy Krieger provided us with an opportunity unlike any other.“ – Jill, Nathaniel’s mom
“Kennedy Krieger provided us with an opportunity unlike any other,” Jill says. “The staff was like one big family, supporting Nathaniel all the way through rehab. I don’t know where we’d be today without that experience.” “We are so blessed and grateful,” she adds, “for everything Kennedy Krieger has done and continues to do for Nathaniel and our family.” – LT Visit KennedyKrieger.org/Neurosurgery to learn more about selective dorsal rhizotomy and other neurosurgical services offered at Kennedy Krieger through its partnership with Johns Hopkins.
B rav o, Karam!
“I have confidence that we’re doing all we can for Karam, because Kennedy Krieger is the best place for him.” – Dana, Karam’s mom
Karam and his parents moved almost halfway around the world so he could receive medical care at Kennedy Krieger.
Karam’s first symptoms were the clouded lenses of his eyes. An eye doctor in Syria diagnosed him with cataracts. Then Karam’s development, which had been typical up to around his second birthday, began to regress, and he began experiencing rapid eye movements and some seizures. Karam’s doctors sent a sample of his DNA to a laboratory in Germany, where it tested positive for HCC.
aram loves school, swimming and his bright green iPad.
It’s a captivating device for the 6-year-old, who understands English and Arabic but can only speak a few words of each. He uses his iPad to watch educational cartoons and listen to songs like “Old MacDonald Had a Farm.” Karam’s parents, Dana and Ousama, use the iPad to motivate their son to do his therapy. One day last August, as Karam, gripping the handles of a small walker, slowly made his way across a therapy gym at Kennedy Krieger Institute, his dad sat on a rolling stool a few feet away, holding up Karam’s treasured possession and scooting backward as Karam got ever closer to the target.
Karam struggles to stand, walk and talk. He had eye surgery last year to replace his lenses with artificial ones. The disease is known to affect only about a dozen individuals worldwide, and more research is needed to understand it, says Dr. S. Ali Fatemi, Karam’s doctor at Kennedy Krieger and director of the Institute’s Division of Neurogenetics and Moser Center for Leukodystrophies.
“Bravo, Karam!” Ousama cheered with every step his son took. “Bravo, Karam!” After enough steps, Karam reached out and grabbed his iPad. Smiles spread across their faces. Just two years ago, Karam could barely sit up, let alone take a step and reach for things. Karam, who was born in Syria, has hypomyelination and congenital cataracts, also known as HCC, a type of leukodystrophy that makes it difficult for the body to produce myelin, the protective coating surrounding brain and nerve cells. It’s one of many different types of leukodystrophies, all of which affect myelin. 6
While there’s currently no cure, Dr. Fatemi says it’s possible that drugs now on trial to help individuals with multiple sclerosis— another disorder affecting myelin—could someday help Karam.
After using the walker, it’s time for Karam to practice standing up. Physical therapist Brittany Hornby helps him sit down on a floor mat. Then, she places his arms on a very low table adjacent to the mat. Within Karam’s reach on the table are several brightly-colored blocks and the coveted iPad.
Below: Ousama, Karam’s dad, holds up Karam’s iPad, encouraging his son to reach for it. Physical therapist Brittany Hornby supports Karam on a therapy ball while Dana, Karam‘s mom, looks on. Right: Physical therapist Brittany Hornby helps Karam practice standing from kneeling (top) and riding a tricycle (bottom).
Above: Karam and his parents, Ousama and Dana, visit Kennedy Krieger’s Therapeutic Garden, located outside the Institute’s outpatient center. Left: Physical therapist Brittany Hornby helps Karam walk with the aid of a walker.
Just as Karam reaches for the iPad, Ousama steps on a pedal to make the table rise slightly, putting the iPad out of reach— unless Karam stands up. Karam positions his hands on the tabletop, and, using the table as a support, pushes himself into a standing position. Dr. Fatemi watches with a practiced eye. “That’s great!” he says. “I haven’t seen him do that before.” Dana and Ousama met Dr. Fatemi four years ago at a United Leukodystrophy Foundation meeting in Baltimore. Having read about the Moser Center for Leukodystrophies, they’d flown to the U.S. specifically to ask him, in person, what they should do to help their son. Syrian medical facilities didn’t have the resources to help Karam. “The best thing for you to do,” Dr. Fatemi advised Dana and Ousama, “is to move here.”
For a few years, a happy childhood seemed elusive. But since coming to Kennedy Krieger, Karam’s gotten stronger and more communicative, and even started laughing again.
For his first two years in the U.S., Karam wasn’t able to stand at all. He’d been wheelchair-bound for so long that the tops of his leg bones had rotated out of their hip sockets.
In June 2016, Dr. Ranjit Varghese, medical director of the Institute’s OrthoCerebral Palsy Program, operated on Karam to reposition the bones of his hip joints and to lengthen some of his tight leg muscles so he could stand and move around better. Karam spent a month in Kennedy Krieger’s inpatient hospital, and several weeks after that at the Institute’s day hospital. When he returned home, he started receiving visits from Andrea Sharar, senior speech-language pathologist for the Institute’s Community Rehabilitation Program, as well as from occupational and physical therapists of the program. Sharar has
been helping Karam develop the oral musculature needed to speak—blowing bubbles is a favorite strengthening exercise. She’s also been helping him use a picture communication book and an iPad app to augment his communication. Karam uses the book and app to point to pictures of what he wants or is trying to say. His therapies are paying off. When the family left Syria, Karam had stopped making eye contact with people and could no longer indicate what he wanted. “But now, he makes eye contact, and when he wants something, he looks for it, and he points to it,” Dana says. “All of those things, he got from Andrea and his other therapists.”
Reaching Higher Ousama holds up a blue block, hoping Karam will reach for it. But Karam has eyes only for his green electronic device. He takes the block, gives it back to his dad, and reaches for the iPad instead. He knows what he wants. For a few years, as Karam gradually lost the ability to walk, talk and laugh, a happy childhood seemed elusive. But since coming to Kennedy Krieger, he’s gotten stronger and more communicative, and he’s even started laughing again. “I have confidence that we’re doing all we can for Karam,” Dana says, “because Kennedy Krieger is the best place for him.” – LT Visit KennedyKrieger.org/MoserCenter to learn more about the Moser Center for Leukodystrophies, and KennedyKrieger.org/CommunityRehab to learn more about the Community Rehabilitation Program.
Big Man on Campus Learning and thriving with autism at Kennedy Krieger High School
Mikey loves keeping busy. He loves music videos and video games. He loves the rides at amusement parks and riding on airplanes. He loves to dance, and he’s fascinated by news tickers. He reads every word as it slides across the bottom of the television screen. He’s quick, too. Every morning, when he gets to his classroom at Kennedy Krieger High School, he pulls out his binder and gets right to work, sometimes completing activities before his teachers have the next ones ready. He thrives on routine, and on checking off tasks as he finishes them. He’s very curious: He loves walking through the school, seeing what everyone is up to as he heads down locker-filled hallways to the library, cafeteria or school store. And he takes pride in himself and in his work. When another student receives praise for an activity or task, Mikey—not to be outdone—quickly finishes the same task with intentional perfection. The praise he receives encourages him to put his best foot forward as he starts his next task. It’s the perfect school environment for Mikey, but it’s not how things started out.
Right Diagnosis, Right School Mikey was diagnosed with autism when he was 7 and attending third grade at a public school in Maryland. Initially after his diagnosis, the public school transferred him to a special education classroom, but Mikey, who was nonverbal at the time, needed more structure and oneon-one time with teachers. The school referred Mikey to Kennedy Krieger Institute, and he finished third grade at the Institute’s Fairmount Campus in downtown Baltimore. The Fairmount school offers kids from kindergarten through the eighth grade a chance to get the education they deserve in a setting designed just for them. At first, Mikey was in a class of mostly semi-independent learners, but his new Fairmount teachers quickly noticed it wasn’t the right fit for him—Mikey didn’t like being corrected in front of everyone. His schoolwork and classroom behavior reflected his frustrations. After a special meeting of teachers and specialists called together solely to discuss how to best help Mikey learn and thrive, Mikey joined teacher Kathryn Henry’s classroom. At that time, Henry’s classroom was operating on a dyad system, and it was exactly what Mikey needed. In the dyad system, two students work side-by-side, alternating time with a teacher. Henry and her co-teachers placed Mikey in a dyad with another student who took correction well. A keen observer, Mikey noticed everything she did—correctly and incorrectly—and imitated her correct behaviors. By instructing Mikey’s dyad partner, Henry and her coteachers were teaching Mikey, too—and Mikey no longer had to feel embarrassed in front of his peers just for being corrected. A quick learner, he soon settled into a groove. “It took the pressure off of him, so he could really start to learn,” Henry says. “I’ve never seen that before with any of my students.” By the end of fourth grade, Mikey was doing amazingly well. His behavior was excellent, and he was even taking some feedback from his teachers. Mikey was learning and thriving.
Mikey works with his ninth-grade teacher, Gabriela Bandi.
‘Proud’ Henry taught Mikey for his final two years at the Fairmount school. As part of the curriculum, Henry taught Mikey and his fellow classmates language arts, math and writing, and students received additional instruction on an individual basis. Mikey got to be very quick with math problems and anything relying on rote skills, Henry says. The Fairmount school takes an interdisciplinary approach to education, employing special educators, behavioral specialists, mental health professionals, occupational and physical therapists, speech pathologists, nursing staff members, and a neuropsychologist to ensure all students’ needs are met. Mikey met with his speechlanguage pathologist, Lauren Hoffman, three times a week to work on communication skills. >>
“When Mikey joined my classroom, I would rarely see him happy, but now, he smiles all the time. He has the biggest smile, and it was so cool to see that smile grow.” – Kathryn Henry, Fairmount school teacher
“When Mikey joined my classroom, I would rarely see him happy,” Henry says. “But now, he smiles all the time. He has the biggest smile, and it was so cool to see that smile grow.” Ultimately, Henry had to implement a special protocol— no running in class—because Mikey had gotten so happy, he sometimes started running laps around the classroom. From left to right: teacher Kathryn Henry, speech-language pathologist Lauren Hoffman, Mikey and assistant teacher Shelby Stevens. Henry, Hoffman and Stevens all worked with Mikey at the Fairmount school. 9
Big Man on Campus (continued from page 9)
Initially, when Hoffman started working with Mikey, he was using low-technology visuals—pictures on paper. But, ever motivated by his peers, and seeing his new classmates at the Fairmount school using more sophisticated forms of communication, he started using an iPad program application to which Hoffman introduced him. Using the application’s photo library and sentence formation software, Mikey started stringing together pictures and words, and then words with words, eventually forming full sentences with adjectives and verbs. Soon, Mikey was no longer just responding to questions, but was actually initiating communication—as Hoffman says, “he was becoming more comfortable in his own skin.” With Hoffman’s help, Mikey started saying a few spontaneous words, too. When he first said the word “proud” after completing a task correctly, Hoffman knew he’d made a breakthrough. “It meant he was starting to have confidence in himself.”
“By the eighth grade, he was feeling like the big man on campus.”
He even started communicating with another student using a similar communication application—a major step forward, since “it’s not often that our students show interest in communicating with other students,” explains Shelby Stevens, another one of Mikey’s teachers at the Fairmount school. – Phylicia Baker, Fairmount school caseworker
By the eighth grade, says Phylicia Baker, Mikey’s case worker during his last year at the Fairmount school, “he was feeling like the big man on campus.”
A Tremendous Turnaround This past summer, Mikey started high school. Naturally, there was angst—just about every rising freshman experiences it. But because the Fairmount school works so closely with the Institute’s high school to ensure a smooth transition for ninthgraders, Mikey did just fine. Mikey’s on track to receive a certificate of completion by age 21, and training in one of five job tracks: retail, hospitality, construction, horticulture or information technology, says Gabriela Bandi, his ninth-grade teacher.
Sometimes Mikey finishes an activity before his teacher, Gabriela Bandi, has the next one ready.
A pro now with his communication device, Mikey hopes to get into the technology track, says his mom, Rheon. “He’s an electronic gadgets guy,” she says, and his favorite video games employ a lot of action and strategy. But whatever industry he, his teachers, therapists and family decide together is best for him, “I’m looking forward to seeing where that takes him,” Rheon adds.
“Since he’s been at Kennedy Krieger schools, he’s just made a tremendous turnaround.”
Over the past few years, Mikey’s ability to communicate with his family through spoken words has increased dramatically, “although when he gets stuck, the – Rheon, Mikey’s mom iPad is always handy to help him express what he’s thinking,” Rheon says. She attributes his improved ability to communicate not just to the communication device, but to the therapies and education he’s received at school. “We’ve all benefited,” Rheon says. “Not just Mikey, but our family as a whole. Since he’s been at Kennedy Krieger schools, he’s just made a tremendous turnaround.” – LT Visit KennedyKrieger.org/SchoolPrograms to learn more about the Institute’s school programs. At Kennedy Krieger schools, teachers and specialists meet regularly to review students’ progress and needs. Clockwise, from front: speech-language pathologist Lauren Hoffman, assistant teacher Shelby Stevens, teacher Kathryn Henry, mental health case manager Phylicia Baker, and behavior specialist Jason Mund. All worked with Mikey at the Fairmount school.
Herbal Drug Brings Hope
A drug meant to treat the debilitating seizures of Sturge-Weber syndrome performed well in a clinical trial at Kennedy Krieger. By Elise Welker
he seizures that are a constant reminder of the most severe effects of Sturge-Weber syndrome (SWS) often come on without warning. In their wake, they can leave children without mobility or language, depending on the degree of resulting brain injury or paralysis. While some children find relief with anti-convulsant medications, many cannot tolerate the sedating effect of the medications or suffer from uncontrolled, severe seizures. Notably, SWS differs from other causes of epilepsy in that decreased blood flow to the brain can result in stroke, making seizure control an important priority. Families like the Fanecas know this reality all too well. Not once, but four times, a seizure stole their daughter Anabelle’s abilities. Collectively, Anabelle has spent nearly 32 months of her childhood in rehabilitation, regaining the ability to talk, walk, read, remember math facts, ride a bike—and even tell a joke. Determined to help their daughter and all children with SWS, the Fanecas funded a study (led by Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute) to determine if a well-known herb— administered orally, in a pilot study, as Epidiolex—could hold the key to seizure control. The Fanecas look forward to when Epidiolex is clinically available for the treatment of seizures in Sturge-Weber syndrome. “The results offer hope,” Dr. Comi says, “that children with SWS may soon have a future where a new and safer treatment is available to improve their quality of life.” Currently only available in clinical trials, Epidiolex is a pharmaceutical formulation of cannabidiol (CBD) oil provided as part of the FDA-approved expanded-access program for pediatric epilepsy. CBD is attracting growing interest from researchers studying a variety of neurological diseases. Pre-clinical studies show that CBD can have therapeutic effects on blood vessel function and possible neuroprotective properties.
Dr. Anne Comi
Dr. Comi and her colleagues treated five patients with SWS with Epidiolex. The patients had the common features of SWS, including abnormal blood vessels in the brain and eye and a facial port-wine birthmark. Three of the patients demonstrated a greater-than-50-percent reduction in seizures for more than a year, and one patient became seizure-free. These three children had previously tried— with no benefit—two to seven seizure medications each. The patients and their families reported improved quality of life, along with other positive neurologic, behavioral or mood changes.
When we enrolled Addisyn in the study, she was on four seizure medications at maximum dosages. She was having several seizures a day and was like a zombie, barely functioning. After one dose of Epidiolex, she didn’t have any seizures. Now, she’s down to just one medication in addition to the Epidiolex, and she’s thriving. – Krissta Ross, mom of study participant Addisyn, age 9
While researchers don’t know for sure how CBD works to reduce seizures, Dr. Comi hypothesizes that the drug improves blood vessel function and decreases inflammation, improving blood flow to the brain and brain function.
The study’s promising results were published in June 2017 in “Pediatric Neurology,” a premier journal in its field, prompting interest in the next phase of clinical study. Dr. Comi plans to pursue a multi-centered, placebo-controlled study to demonstrate the effectiveness and safety of Epidiolex for seizure treatment in SWS. Few are as enthusiastic about this research breakthrough as the Faneca family, who hope that future study will quickly translate to FDA approval of Epidiolex as a new clinical treatment for children with SWS-related seizures.
Visit KennedyKrieger.org/AddisynStory to meet Addisyn. Visit KennedyKrieger. org/SWSCenter to learn more about SWS and the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger.
Conquering Chronic Pain
ife isn’t easy for kids with chronic, debilitating pain. Without treatment, they’re often forced to sit life out on the sidelines, watching other kids have all the fun. Some kids experience such unbearable pain that they’re unable to walk without assistance or even go to school. But Kennedy Krieger Institute offers these kids and their families hope. At the Institute’s Pain Rehabilitation Program, clinicians from a variety of fields come together to help kids overcome their pain and get as much normalcy back into their lives as possible.
Kennedy Krieger’s interdisciplinary Pain Rehabilitation Program helps kids and teens get their lives back without narcotics.
“Our goal is to help our patients learn to conquer their pain, and not be controlled by it—to help them live their lives again,” says Dr. Suzanne Rybczynski, medical director of the Institute’s inpatient services. The program provides evaluations, recommendations and treatment for kids who’ve been suffering from debilitating pain for six months or more. The program’s staff includes doctors, nurses, and physical, occupational and cognitivebehavioral therapists, as well as other specialists, making it “interdisciplinary to the core,” says Dr. Irfan Suleman, medical director of the Pain Rehabilitation Program.
Above, Pain Rehabilitation Program staff members (top row, left to right) Dr. Luke Wang, Dr. Joan Carney, Dr. Irfan Suleman, Dr. Suzanne Rybczynski and nurse practitioner Mary Burr; and (bottom row, left to right) outpatient nurse coordinator Stephanie Caños Stalker, physical therapists Deanna Johnson and Jenna Werner, and program coordinator Regina Byan. Not pictured: behavioral psychologists Dr. Samantha Kluger, Dr. Keith Slifer and Dr. Caitlin Thompson; physical therapist Heather McLean; and Christopher Joseph, the Institute‘s director of physical therapy. 12
The gateway to the program is the Pain Rehabilitation Clinic, explains Mary Burr, the clinic’s nurse practitioner. At the clinic, each child is evaluated by a doctor and a nurse practitioner who specialize in pain, as well as by a cognitive-behavioral therapist and a physical therapist. The interdisciplinary team approach ensures that no aspect of a child’s pain or care plan—medical, psychological or therapeutic—goes unnoticed. “We’ve found that this individualized, team approach helps us establish trust with the families,” Burr says. “By the time they get to us, families have often been to multiple providers, have received multiple diagnoses, and don’t know whom or what to believe.”
A Plan for Every Patient Children and teens—the average patient age is 13—arrive at the clinic with, collectively, a host of different pains. All of them demonstrate functional disability—an inability to engage with or execute daily living activities and tasks. Many of the kids evaluated or treated by the program have complex regional pain syndrome, in which an injury heals but the brain keeps sending out pain signals and the body keeps experiencing the pain of, say, a broken ankle, long after the ankle heals. Some have chronic headaches or abdominal pain. Some cannot move their arms or legs without searing pain running through their bodies. Some wear dark glasses because they’ve been inside for so long that any light hurts their eyes, and many are depressed, explains Dr. Keith Slifer, clinical director of pain psychology services at Kennedy Krieger. After evaluating a patient, clinic team members gather to determine the child’s best care plan. For some children, the group recommends outpatient physical and cognitive-behavioral therapies, either at Kennedy Krieger’s outpatient center or in patients’ home communities. For others, it’s several weeks at the Institute’s day hospital—therapies will be intense, but the kids will get to return to their families at night. And for some kids, clinic team members recommend a stay at Kennedy Krieger’s inpatient rehabilitation hospital. The program’s clinicians have found that a vigorous routine of physical, occupational and cognitive-behavioral therapies is crucial to conquering pain. Treatment plans may include physical therapy to strengthen muscles that have weakened from
“Our goal is to help our patients learn to conquer their pain, and not be controlled by it—to help them live their lives again.” – Dr. Suzanne Rybczynski
Pain Rehabilitation Program clinicians meet frequently to discuss patients. Above (left to right): Mary Burr, Dr. Suzanne Rybczynski, Dr. Irfan Suleman, Dr. Luke Wang and Stephanie Caños Stalker.
underuse, and occupational therapy to learn new ways to do things without causing the body so much pain. Some children are referred to neurologists, geneticists, gastroenterologists or other specialists for additional evaluation. For patients experiencing pain from an injury that healed long ago, the team recommends a gradual reengagement—under medical supervision—with regular activities, like brushing their teeth or getting dressed, carefully building up to completing entire activities on their own. This retrains a patient’s brain to interpret physical signals more like it did before injury, reducing the perception of pain, Dr. Slifer explains. For some children, pain interventions guided by ultrasound or fluoroscopic technology (with the latter, a continuous X-ray beam produces a moving image of the targeted body part on a video monitor) can lessen the pain—or sometimes even eliminate it, explains Dr. Suleman, an anesthesiologist who specializes in pediatric pain. These interventions are performed through Kennedy Krieger’s partnership with Johns Hopkins, and they take place under sedation in the operating room at Johns Hopkins’ children’s center, one of the few hospitals in the country providing such services.
Getting Better This past summer, Kennedy Krieger’s inpatient rehabilitation hospital provided treatment to several teenage girls who’d been diagnosed with chronic pain. All summer long, they encouraged and motivated each other to keep up with their therapies— they were determined to return to more typical teen activities. Supported by each other and their care team, they all got better. “I love working with the hospital’s pediatric pain patients,” Dr. Rybczynski says, “because they’re so motivated and they work so hard. “There’s the real possibility that they will get better,” and very often, they do, “and I love that.” – LT Visit KennedyKrieger.org/PainRehab to learn more about the Pain Rehabilitation Program.
IN MY OWN WORDS
Giving Back the Gift of Le rning By Erin Richmond
A teacher and former fellow of Kennedy Krieger’s Center for Innovation and Leadership in Special Education gives back to the very community that supported her as a child with a disability.
rowing up, I loved school. I was a curious, bright and steadfast learner.
As a child with a disability, I learned first-hand the value of special education. The supportive services I received at school helped me achieve far more than doctors initially thought possible. I graduated in the top 5 percent of my class, and went to college and graduate school. I have Treacher Collins syndrome, a rare genetic condition that affects the development of the bones and tissues in my face. At 4 months old, I went into full respiratory and cardiac arrest at home. Doctors told my parents I might not live through the night and feared severe neurological damage if I survived. Several days later, I made my first trip to the operating room for a tracheostomy. Since then, I’ve had more than 50 surgeries. In college, I dedicated myself to empowering and giving hope to children with disabilities. I went from receiving special education services to majoring in special education. For the past eight years, I’ve been a special education teacher, in both special education and inclusive classrooms, at public schools in the Baltimore area, where I grew up. This past school year, though, I did something different. I was a fellow at Kennedy Krieger Institute’s Center for Innovation and Leadership in Special Education. It was an incredible opportunity for me to learn more about special education, and develop and apply my leadership skills and abilities in the field. Guided by a mentor, I studied the neuroscience of learning, the principles of behavior change, education law, and evidencebased practices, discovering along the way that teaching is both an art and a science. Once a week, I joined center Co-Director Dr. Nancy Grasmick, vice chair of the Institute’s board of directors and the nation’s longest-serving state education chief, to discuss the complexities of our country’s education system.
I also co-taught an introductory course on special education at Towson University and led leadership internships at Baltimorearea elementary and middle schools. These immersive training experiences transformed my perspective on education, giving me a deeper understanding of the big picture of special education, and encouraging me to grow into an educational leader. Students shouldn’t suffer from poor programming, curriculum writing and instruction simply due to teachers’ and administrators’ lack of training and poor understanding of neuroscience.
“It’s my dream to expand access to education for all children, especially for those with disabilities.” – Erin Richmond This year, I’m putting what I learned during the fellowship into practice, and sharing what I learned with my fellow teachers. I’m doing this in the same Baltimore County community in which I grew up, because I want to give back to the community that supported me during my own journey as a special education student. Special education ensures that all children have a chance to learn in a safe and personalized environment. I know from experience that special education plays a vital role in any education system, and I want to do whatever I can to help the next generation of learners succeed in life. Visit KennedyKrieger.org/Special to learn more about the Institute’s Center for Innovation and Leadership in Special Education, and its fellowships, and to watch a video of Erin talking about her experience there.
NEWS BRIEFS & EVENTS
ROAR for Kids: 5K & Fun Walk Saturday, April 28, 2018 Oregon Ridge Park, Cockeysville, MD
Run into the jungle with ROAR! Mark your calendar for Kennedy Krieger Institute’s 14th annual ROAR for Kids 5K run, low-mileage walk and family festival—this year, with an all-new jungle theme. Things are going to get hairy, maybe slithery, possibly ferocious and definitely downright wild as we embrace ROAR’s lush, natural surroundings. Dress up like your favorite wild animal to win prizes! The 5K run will follow a picturesque course through Oregon Ridge Park, and the family festival will include games, giveaways and the outrageously silly mascot obstacle race. This event, which benefits research and programs for children at the Institute, is truly fun for the whole family. Starting in January, visit ROARforKids.KennedyKrieger.org for exciting updates.
3R D A N N U A L
HATS & HORSES Friday, May 4, 2018 The Grand Lodge of Maryland Hunt Valley, MD Join the Women’s Initiative Network for Kennedy Krieger Institute’s third annual Hats & Horses event at The Grand Lodge of Maryland in Hunt Valley. This year’s festivities will be co-chaired by Cynthia Cavanaugh, Aimee Fulchino, Paige Kenney and Lisa Vogel, and will include a seated dinner catered by Linwoods, one of Baltimore’s top-rated restaurants. All previous Hats & Horses events have sold out! Email Dara Schnee at Schnee@KennedyKrieger.org to be added to the invitation list or to become an event sponsor.
At Hats & Horses, 2017 (left to right): Doug and Erin Becker, Dara and Dr. Charles Schnee, Dana Di Carlo and Wes Moore.
Baltimore Running Festival More than 200 Kennedy Krieger patients, former patients, friends, family members, staff members and community members joined the Institute’s charity team (pictured above) as racers or virtual racers in the Baltimore Running Festival on Oct. 21. Collectively, they raised more than $115,000 to support adaptive sports, recreational activities, and new equipment and technology for the Institute. Thank you, participants, volunteers and sponsors!
Join us on social media! Visit: KennedyKrieger.org/Connect
Photo credit: Jason Putsché Photography, LLC
NON-PROFIT U.S. POSTAGE
PERMIT #7157 BALTIMORE MD
707 North Broadway Baltimore, Maryland 21205
Help us find the keys to unlock his potential. Make your year-end, tax-deductible gift today! When you give to Kennedy Krieger Institute, you’re helping us find the keys to unlock the potential of kids like Mikey. Your gift will support innovative care, pioneering educational programming, and the development of groundbreaking treatments— all of which bring hope and transform lives. Thank you so much for your support!
Visit KennedyKrieger.org/YE2017 to donate online. For more information, call us at 443-923-7300.
Kennedy Krieger High School ninth-grader Mikey gives his teacher, Gabriela Bandi, a high five. Read his story on page 8.
W H Y W E GI V E “Kennedy Krieger Institute has a world-renowned reputation for excellence and cutting-edge research—we always feel Saij is in the very best of hands at Kennedy Krieger.” – Vicky (right) and Gurpreet (back row) Singh, parents of Saij (front row), a Kennedy Krieger patient, and Kaveen (left)
Published on Nov 28, 2017
Published on Nov 28, 2017
The Institute's magazine, Potential, informs readers about the latest institute news and advances in research, patient care, special educati...