Treatments & Early Intervention
People with Fragile X syndrome frequently have sensory and perceptual processing issues which affect the way they receive information and their ability to use it to learn.
While currently there is no cure for Fragile X syndrome, there is a range of treatment interventions and management strategies that are of great benefit.
The earlier these interventions and treatments are received the better the outcomes in future life and so early diagnosis is vital. Therapies and management strategies are helpful lifelong.
A multi-disciplinary approach tailored to the individual incorporating educational, medical and behavioural management techniques is most beneficial.
Psychological, occupational, physical, special education and speech therapies can be incorporated as appropriate and in a coordinated and integrated approach.
An integrated approach includes a range of specialists:
- Developmental paediatrician and GP who are well informed about the symptoms and implications of a diagnosis of Fragile X syndrome
- Psychologist working within the family model, recognising the impact of disability on families across a life span and the importance of providing support and education across the individual’s environments of school/day/work program, home and community. The focus should be on a functional, practical approach to support everyday life including communication-behaviour support, social-emotional support and education and family support.
- Occupational therapist to improve behaviour management and learning.
- Speech and language therapist to identify and improve communication ability and provide strategies to develop the individual’s understanding and expression of information and decrease anxiety.
- Physiotherapist to help improve muscle tone, coordination and fine and gross motor skills.
- Special educator to improve learning abilities and settings within the educational or work environment.
- Other medical specialists may include a psychiatrist and neurologist
Medical professionals will advise you on management and treatment options. This will generally include their taking a relevant history, conducting an examination, arranging further tests and assessments, providing information on behaviour management and medication options and referral to other professionals if needed.
Medications can be very helpful for management of common behavioural and emotional conditions experienced by people with Fragile X syndrome such as anxiety, ADHD, obsessive compulsive behaviour and mood instability.
To learn more:
Targeted treatments in Fragile X: Q&A with Dr Randi Hagerman
Video filmed in Australia, September 2017. (listen time: 6 minutes)
J Cohen, A Archibald, S Metcalfe, Medical Observer, 29 June 2012.
National Fragile X Foundation (US), Treatment recommendations
A range of consensus documents cover topics including sensory processing, autism, toileting, sleep, eating, hyperarousal, seizures, behaviours, education.
Q&A with Dr Marcia Braden: Education and Behaviours in Fragile X
Produced by Fragile X Association of Australia, 2015. (listen time: 60 minutes)