Growing up with Cerebral Palsy: Planning Transition into Adulthood

For individuals living with cerebral palsy and their families, the transition from the pediatric care setting to adult care providers can be a stressful and challenging one. Dr. Oskoui, pediatric neurologist at Montreal Children’s Hospital, provides some practical advice to assist with this transition, focusing on preparing individuals for “living well” with chronic disability and optimizing their full potential, while also minimizing the emotional toll on parents during this difficult time of transition.

Traditionally, most physicians simply transfer their patients to adult care providers when the child reaches 18 years of age. This can result in children with cerebral palsy and their parents experiencing a tremendous sense of abandonment from their health care team, as well as a sense of loss, fear and uncertainty. The idea of transition is the purposeful, planned preparation of patients, families and caregivers to facilitate a transition which takes into account the need for continued monitoring of persisting needs that were present in childhood, such as feeding difficulties, gastroesophageal reflux, constipation, seizures, progressive scoliosis, contractures and dislocations secondary to spasticity, as well as to address the many new health issues that may emerge in adulthood, such as overuse syndromes, chronic pain and fatigue, and/or osteoarthritis.

Dr. Oskoui recommends starting the process as early as age 12, maintaining an up-to-date health record of the child’s medical history and providing for some overlap in care by adult care providers and your child’s pediatric care providers, in order to maximize continuity of care and optimize the child’s health and wellbeing.

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