Dating a woman with spina bifida
It is recommended that the Spina Bifida Care Coordinator provide developmentally-appropriate care education across the spectrum of symptoms and conditions related to Spina Bifida to better empower children and families to manage their own care and recognize complications and emergencies.Identify and or improve gaps in the family knowledge base specifically related to the teenage age period (mobility progress, skin inspection, bowel and bladder care, sexuality, academic/cognitive development, social functioning at school and with peers, high risk behaviors, and more).
The coordinator should use two-way communications to identify and address medical concerns and obtain updated records from the primary care provider such as immunizations, growth charts, developmental screenings, and other materials. It is recommended that the Spina Bifida Care Coordinator work with the teenager and his/her families, Spina Bifida team members, and therapists to continue progress on self-management goals and education.Urge the family and child (if appropriate) to perform daily skin checks.Recommend that the child’s skin is properly moisturized, and that appropriate weight-shifting is taking place based on the child’s neurologic level.Review with the family and child the signs of brain stem dysfunction that might occur in this age range (poor control of secretions, swallowing dysfunction, stridor, and declining language function).
Follow the child clinically to observe for these signs. Teach or review with the family and child and urge them to observe for signs of TSC (back pain, declining sensorimotor function, urological changes, and progressive orthopedic deformities and/or scoliosis).Follow the child clinically to observing for these signs. Use adjunctive studies judiciously (imaging such as MRI/CT, urodynamics, and sleep and swallow studies) during routine visits with the well child, according to experience, preference and best clinical judgment, to augment clinical decision-making.