Multidisciplinary Treatment of Fragile X Syndrome (FXS) Discussion
The webinar was a facilitated one-hour Q&A session covering a wide-range of topics. The panelists shared recommendations and information during the discussion, each from their own professional perspectives. Below are a few topics and take-aways discussed during the webinar.
- Treatments and strategies are not a one-size-fits-all solution.
- Communication is crucial amongst the members of any team. Each professional may have a different perspective or observation and, when shared amongst the team, can help optimize the treatment plan and interventions. Remember, parents and Self-Advocates are part of the team too! They also need to be good communicators to ensure the most effective plan is reached.
- Collecting information or data is important information when creating the treatment plan. Regularly evaluate the plan by collecting data on the progress towards the targeted goal(s) and report any concerns, progress and successes to the team.
- Avoiding challenging behaviors starts before the behavior occurs. Panelists suggested focusing on implementing self-regulation/mindfulness strategies may help the individual avoid behaviors.
- Introduce and implement new strategies when the individual is in a calm/regulated state. Continue to practice and encourage use of the strategy to ensure the individual is confident and successful when applying the strategy when they are not regulated or feeling upset.
- Utilizing complimentary treatment options may be necessary to make meaningful progress towards any goal(s). An example of complimentary treatments would be implementing behavior modification strategies with medication(s) to improve the effectiveness of each strategy.
Individuals living with FXS and their families are an important part of the multidisciplinary team. Communicating what their treatment priorities are with the professional team will help create a focused plan and implementation strategy to achieve the goal(s).
Learn More About the Panelists
Craig Erickson, MD
Professor at Cincinnati Children’s Hospital Medical Center
Craig A. Erickson, MD is a Professor of Psychiatry at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine-Affiliated. Dr. Erickson leads a neurodevelopmental clinical and research group focused on improving clinical care through research discovery. He is the Director of the Cincinnati Fragile X Research and Treatment Center which is one of the largest such programs in the world. He serves as the Chair of the Clinical Trials Committee organized by the National Fragile X Foundation and is a leader in translational medicine efforts in fragile X syndrome, autism, and related disorders. Additionally, he is the director of research in the Division of Psychiatry at Cincinnati Children’s Hospital.
Laura Hess, PhD, OTR/L
Assistant professor at Dominican University of California
Laura Greiss Hess, PhD, OTR/L is the assistant professor in the occupational therapy department at Dominican University of California. She has earned professional and comprehensive certification in sensory integration, and certification in assistive technology applications. After working as a school-based OT practitioner for 17 years, Laura transitioned to working at the UC Davis MIND Institute. For 12 years she collaborated on research and clinical teams specializing in fragile X syndrome, autism spectrum disorder, learning/intellectual disabilities, and assistive technology applications. This work contributed to national and international conference presentations and publications. She has been passionate about bringing FXS literature and research to pre-service occupational therapy graduate students.
Kerrie Chitwood, PhD, CCC-SLP
Professor and Program Director California State University, Monterey Bay
Kerrie Lemons Chitwood, PhD, CCC-SLP, is a licensed speech-language pathologist with 24 years of clinical and research experience. Kerrie currently is the program director for the Master of Science in Speech-Language Pathology at California State University, Monterey Bay (CSUMB) and an assistant professor in the Department of Education and Leadership at CSUMB. Kerrie is also co-director for the Center for Reading Diagnosis and Instruction (CRDI). From 2002-2014, Kerrie worked at the U.C. Davis MIND Institute, where she was part of the Fragile X team. She values intervention research and has extensive experience working as an integral member of a collaborative interdisciplinary team. She collaborated on national and international presentations as well as research publications specific to Fragile X syndrome and other neurodevelopmental disorders. She is committed to translational research and thrives to bridge the gap between research and practice specifically as it pertains to students and families with FXS and other neurodevelopmental disorders in educational and community settings.
Rebecca Shaffer, PsyD
Director of Psychological Services at Cincinnati Fragile X Treatment and Research Center, Cincinnati Children’s Hospital Medical Center
Dr. Shaffer is an associate professor of pediatrics at Cincinnati Children’s Hospital. She specializes in both clinical care and research with Fragile X syndrome and autism spectrum disorder. She provides psychological assessment and behavioral treatment to a wide range of individuals with Fragile X syndrome and the Fragile X premutation. Her research is primarily focused on emotion dysregulation in both FXS and ASD. She enjoys helping individuals find ways to calm their bodies and minds and fully engage in the world around them. She also enjoys helping caregivers find ways to best support them in this process.