Dating a woman with spina bifida
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.
Assist the family by making them aware that transition to adult life involves many aspects beyond health care, including educational planning or job training, making arrangements to live independently, and financial planning.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).(See Transition and Self-Management and Independence Guidelines) 3.Review and observe for signs of acute shunt failure (headache, neck pain, vomiting, lethargy/sleepiness), and chronic shunt failure (recurring low grade headache and neck pain, behavioral and/or cognitive changes, neurological decline, urological 4.Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal changes.
(clinical consensus) Monitor for a secondary injury and, if identified implement a prevention program.
This may include assistance with insurance authorization when needed. It is recommended that the Spina Bifida Care Coordinator update the primary care provider on the current care goals and recommendations of the Spina Bifida multidisciplinary care team.
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.
Collaborate with primary care provider to review age-appropriate screenings and assist with referrals to mental health and social services when appropriate. It is recommended that the Spina Bifida Care Coordinator serve the family as the lead contact person and information provider for the multidisciplinary medical services for the person with Spina Bifida and monitor family needs and prescriptions for durable medical equipment, supplies, and medications, as needed. It is recommended that the Spina Bifida Care Coordinator conduct an inventory of the person’s ability to provide self-management, complete activities of daily living, and manage mobility equipment and transportation needs.
For a person with a significant intellectual disability who may not be able to live independently, assist the family with the conservatorship process prior to age 18, and with maintaining Supplemental Security Insurance (SSI) and other types of insurance coverage.
Follow the child clinically to observe for these signs.6.