Clinical Connection Spring 2012

News & Updates for Healthcare Professionals Dear Colleague, For the past 75 years, Kennedy Krieger Institute has been a national leader in evaluating and treating children and young adults with disorders and injuries of the brain, spinal cord, and musculoskeletal system.

To ensure that your patients receive the best care possible, we take an interdisciplinary team approach that starts with you, the referring physician. Our staff works closely with you and your patient and their family to develop a comprehensive and individualized treatment plan. Depending on their needs, we can offer your patients care in a variety of settings, including inpatient units for a variety of concerns, more than 60 outpatient programs that see more than 16,000 patients each year, day treatment services, and home- and community-based programs. For your convenience and future reference, we’ve provided an overview of our programs and services, as well as clinical and research updates.

We also hope you will take our healthcare professional survey to help us gain a better understanding of what matters to physicians when treating patients who may have a developmental disorder or injury.

Referring Your Patients

To support the needs of physicians and healthcare professionals, our care management team is available to identify and provide information on appropriate clinical programs, handle referrals, obtain consultations with Institute specialists, and schedule appointments for patients and families.

Call 443-923-9403 to reach our Physician Referral Line or visit www.referrals.kennedykrieger.org for information and resources for physicians and healthcare professionals.

For general information, call 1-888-554-2080.

Inside this issue: • Playing it Smart – Neurorehabilitation for sports-related concussions • The Road to Understanding – Finding answers for rare genetic disorders • A Place to Call Home – Therapeutic Foster Care for children with special needs

ProGram News & Updates: • Major multi-site Down syndrome study

If you have any questions or would like to learn more about any of our patient care programs, please call our Physician Referral Line at 443-923-9403 or email us at findaspecialist@kennedykrieger.org.

• Evaluation and treatment for learning issues • Specialized audiology program for children and adolescents with hearing loss • Pediatric pain rehabilitation

Sincerely, Gary W. Goldstein, M.D.

• Survey of healthcare professional needs • Upcoming events and training opportunities

Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Care is provided in a manner that preserves cultural, psychosocial, spiritual and personal values, beliefs, and preferences. We encourage patients and families to become active partners in their care by asking questions, requesting resources, and advocating for the services and support they need.

News & Updates for Healthcare Professionals Research: Down Syndrome Study

Kennedy Krieger Participates in Major Multi-Site Study Exploring Cognitive Variation in Children with Down Syndrome As part of a 10-year study sponsored by the Down Syndrome Cognition Project, Kennedy Krieger Institute is one of six sites across the country studying how genetics influence learning and behavior in children. This large scale, multi-site project will identify genetic and environmental factors that cause variations in cognitive functioning in individuals with Down syndrome. The study is looking for individuals with Down syndrome between the ages of 11 and 18 years.

The study is being conducted at the following locations: • Children’s National Medical Center, DC • Emory University, Georgia • Johns Hopkins University, Maryland • Kennedy Krieger Institute, Maryland • Oregon Health & Science University • University of Arizona, Tucson Opportunities are also available for additional testing locations in certain metropolitan areas. For more information, contact Kay Taylor at taylork@ kennedykrieger.org or 443-923-9143.

Assessments: Psychology and Neuropsychology

Evaluation and Treatment for Learning Issues Kennedy Krieger offers comprehensive neuropsychological and psychological assessment services for children and young adults with a range of medical, neurological, developmental, attention, learning, emotional, and behavioral concerns. We apply professional expertise to understanding development and function, and emphasize targeted treatment recommendations to families, schools, and other professionals.

Our comprehensive assessments typically include a review of the individual’s developmental, medical, educational, and family history; a clinical interview with the caregiver(s); direct observation; and formal psychometric testing. Formal testing may include measures of the following: • Learning and memory • Adaptive skills • Non-verbal/visual processing • Attention • Motor skills • Behavior • Personality and social• Executive functions emotional functioning • Intellectual functioning • Academic/pre-academic • Language and languageachievement related functions If you have a patient who could benefit from an assessment, please contact us at 443-923-9403 or visit www.referrals.kennedykrieger.org.

Assessments: Audiology Program

Specialized Audiology Testing for Complex Patients The Audiology Program at Kennedy Krieger provides expert, comprehensive evaluation and management for infants, children, and adolescents with various degrees of hearing loss or suspected hearing loss. We specialize in: • Using a variety of tests to determine whether children have adequate hearing for the development of communication, speech, and language skills, and the exact degree and configuration of the loss in order to provide the most appropriate amplification.

• Providing a full range of audiological tests to assess young children, including visual reinforcement audiometry with animated cartoons, conventional visual reinforcers, measurements of otoacoustic emissions, sedated and unsedated auditory brainstem response, and auditory steady state evoked potentials.

• Offering a full battery of tests for children suspected of having auditory processing disorders, including computerized tests that are not widely available in the community. When a problem with auditory processing is identified, the audiologists will recommend appropriate intervention and management of the child in the educational setting.

• Obtaining audiological assessment of children who have otherwise proven difficult to test.

We have a hearing aid dispensary equipped with the latest technology, including speech mapping for objective measurements of the benefit each infant or child is receiving from hearing aids. All staff members have special expertise in treating infants and children with multiple disorders, as well as normally developing infants and young children with speech and language delays.

Call our Physician Referral Line at 443-923-9403 or visit www.referrals.kennedykrieger.org.

Program Spotlight: Pain Rehabilitation

Comprehensive Outpatient and Inpatient Pain Rehabilitation The Pediatric Pain Rehabilitation Program at Kennedy Krieger Institute is one of only a few facilities in the country that provide both outpatient and inpatient services for children and adolescents with a variety of medical diagnoses, pain locations, and symptoms. Common diagnoses include: • Chronic musculoskeletal pain • Neuropathic pain • Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD) Our patients typically range in age from 6 to 21 years, with an average age of 13. Children younger than 6 years or older than 18 years will be considered on a case-by-case basis.

Because the needs of patients with chronic pain can be complex, an experienced, interdisciplinary treatment team works with each patient and family. Treatment includes: • Rehabilitation • Medication management • Behavioral and psychosocial interventions Our program has a proven record of treatment success and patient satisfaction, and patients who are able to return to school and their lives: • 100 percent of family members report overall satisfaction with our care.

• 98 percent of patients met or exceeded goals set at their admission.

To request a pain evaluation, call 443-923-9403 or visit www.referrals.kennedykrieger.org.

Survey: Healthcare Professional Needs

An iPad® for your Thoughts?* Please take our survey! Your comments and feedback will help us better meet your needs. Our goal is to gain a better understanding of what matters to physicians when treating patients who have or are suspected of having a developmental disorder or injury of the brain, spinal cord, or musculoskeletal system. Your feedback is important to us.

Your personal information and responses will be confidential. Results will only be shared in aggregate.

The survey will take only about five minutes. Once you complete the survey, you will be entered into a drawing to win an iPad®.

The survey is available at www.kennedykrieger.org/ professionals. Click on the survey button on the page.

The survey will be available until July 1, 2012. *Apple® is not a sponsor of this promotion.

We are all born with great potential.

Shouldn't we all have the chance to achieve it?

Professional Events & Training

• Autism: Webinar Physician Training Series “When Therapy is Not Enough: Psychopharmacology of ASD” For more information, visit www.autismevents.kennedykrieger.org.

• Brachial Plexus: Exploring Shoulder Dystocia and Neonatal Brachial Plexus Injury: “Updates on Prevention and Treatment” September 9 and 10, 2012 • Autism: 12th Annual Autism Conference “Understanding Autism: Finding Hope, Possibilities, and Solutions” October 25 and 26, 2012

For a full listing of Kennedy Krieger events, visit www.professionalevents.kennedykrieger.org.

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PERMIT #7157 BALTIMORE MD

707 North Broadway Baltimore, Maryland 21205

Patient Care Programs & Services Inpatient Pediatric Units Feeding Disorders Unit Neurobehavioral Unit (NBU) Rehabilitation Unit—Brain Injury, Pain Rehabilitation, Post-orthopedic Surgery, and Spinal Cord Injury Outpatient Centers, Programs, and Services International Adoption Clinic Albright Clinic Aquatic Therapy Program Assistive Technology Clinic Audiology Program Center for Autism and Related Disorders Barth Syndrome Clinic (New) Behavior Management Clinic Bone Disorders Program Botulinum Toxin Treatment Program Brachial Plexus Clinic Interdisciplinary Brain Injury Clinic Brain Injury Program Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine Child and Family Support Program Child and Family Therapy Clinic Community Rehabilitation Program Constraint-Induced and Bimanual Therapy Program Cranial Cervical Clinic Deafness-Related Evaluations Clinic Center for Development and Learning Developmental Cognitive Neurology Clinic Pediatric Developmental Disorders Clinic Down Syndrome Clinic and Research Center Family Center Pediatric Feeding Disorders Program Fetal Alcohol Spectrum Disorders Program Focused Interdisciplinary Therapy Program Fragile X Clinic Healthy Lifestyles Therapy Program Center for Holoprosencephaly and Related Malformations Intrathecal Baclofen Program

Limb Difference Clinic Military Behavioral Health Services Movement Disorders Program Center for Genetic Muscle Disorders Neurobehavioral Outpatient Program Neurology and Developmental Medicine Program Neurology and Neurogenetics Clinic Clinical Neurophysiology Clinic Clinical Neurophysiology Laboratory Neuropsychology and Developmental Outpatient Clinics Neurorehabilitation Concussion Clinic NICU Follow-up Clinic Nutrition Clinic Occupational Therapy Clinic Orthopedic Clinic Osteogenesis Imperfecta Clinic Pediatric Pain Rehabilitation Program Physical Therapy Clinic Psychiatry Clinic Pediatric Psychology and Consultation Clinic Pediatric Rehabilitation Clinic Seating Clinic Sleep Disorders Clinic and Laboratory Social Work Outpatient Mental Health Clinic Specialized Transition Program (STP) Speech and Language Clinic Philip A. Keelty Center for Spina Bifida and Related Conditions International Center for Spinal Cord Injury Hunter Nelson Sturge-Weber Center Tuberous Sclerosis Clinic (New) Continuums of Care Continuums allow patients to be seen through all stages of care, including 24-hour inpatient programs, day treatment, home- and community-based services, and outpatient programs.

They include Pediatric Feeding Disorders, Neurobehavioral Disorders, and Pediatric Rehabilitation (brain injury, pain management, post-orthopedic surgery, spinal cord injury).

Need additional information or can’t find what you’re looking for? For a complete and current listing of all diagnoses, disorders, programs, and services, visit www.kennedykrieger.org/patientcare.

For more information, visit www.kennedykrieger.org or call 888-554-2080. TTY: 443-923-2645 or Maryland Relay 711.