This presentation from the 2023 AACPDM Community Forum presents a model for creating a smooth transition from pediatric care to adult care for teens and young adults with cerebral palsy.
Our research shows that higher Bone Mineral Density (BMD) was associated with a greater risk of fracture, which is opposite of what we would expect. When we picked apart the BMD ratio we found that bone size had the strongest association with fracture risk, such that smaller bones had a greater risk.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.
For women with Cerebral Palsy, finding a new OB/GYN can be difficult for a variety of reasons: accessibility (both to the building and in the exam rooms), staffing and supports for additional physical needs and more.
When it comes to preparing your child for Botulinum Toxin injections, the first most important thing to remember is to know your child.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.