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1.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). (clinical consensus) ( Bowel Function and Care Guidelines, Mental Health Guidelines, Mobility Guidelines, Neuropsychology Guidelines, Skin (Integument) Guidelines, Urology Guidelines) 2. It is recommended that the Spina Bifida Care Coordinator monitor secondary school functioning and update the school education and health plan so that it includes preparation for college or other higher education opportunities. Encourage participation in age-appropriate activities with peers outside of school. Where appropriate, provide information for driver education and training programs for the teenager with Spina Bifida. (clinical consensus) 3. It is recommended that the Spina Bifida Care Coordinator communicate with the family and multidisciplinary Spina Bifida care team to ensure the individual with Spina Bifida is up-to-date on all sub-specialty care visits, imaging, monitoring, and equipment needs where appropriate. This may include assistance with insurance authorization when needed. 4. 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. 5. 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. Monitor family progress at regular intervals in self-management and clinic visits with the goal of achieving as much independence as is realistically possible. Engage the school nurse to help facilitate self-management and independence. 14 Teach self-advocacy and encourage the teenager to participate as much as possible in his or her own self-management. When appropriate, discuss what limitations to independence the teenager may have due to deficits in memory, cognition, and executive functioning and provide the parents with additional resources and support services, as needed.17-19 (Self-Management and Independence Guidelines) 6. It is recommended that the Spina Bifida Care Coordinator begin preparing the teenager for transition to adult health care, including familiarizing them and their family with the Transition Guidelines and Self-Management and Independence Guidelines. Encourage the family to develop and assemble their own health care folder and records for use during travel, appointments in hospitals that are away from their home area, and other occasions when they will be away from the medical home. Encourage the person to make his or her own medical appointments once she or he is capable of doing so, and to start leading the conversation with specialists and other providers during clinic visits. 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. (Self-Management and Independence Guidelines, Transition Guidelines) 7. It is recommended that the Spina Bifida Care Coordinator assess family dynamics in coping with the diagnosis and evaluate their psychosocial stressors. Collaborate with primary care provider to review age-appropriate screenings and assist with referrals to mental health and social services when appropriate. (clinical consensus) (Mental Health Guidelines) 8.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. (clinical consensus) 9. 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. (clinical consensus) (Self-Management and Independence Guidelines)
o Hypertension. Since there is no agreement on blood pressure targets for patients with Spina Bifida, it is recommended that baseline blood pressure is monitored to know what is considered hypertensive for the particular child. (clinical consensus) o Iron deficiency. o Lipid disorders. o Overweight/obesity, including the role in hypertension. (Nutrition, Metabolic Syndrome, and Obesity Guidelines) o Abuse, neglect, and/or violence. (Family Functioning Guidelines) o Social Isolation, Anxiety, Depression. (Mental Health Guidelines) o Motor vehicle and wheelchair safety. (Mobility Guidelines) o Contraceptive use, pregnancy, and sexually transmitted diseases. (as age appropriate) 1 (Sexual Health and Education Guidelines, Women’s Health Guidelines, Men’s Healthcare Guidelines)
o Shunt concerns. Ask about any neurologic changes. o Sleep apnea. Ask if sleeping is restful and if there are snoring or apneic pauses during sleep. o Skeletal and limb deformity. Check for new issues with bracing, positioning, or function. (clinical consensus) o Constipation, urinary tract infections (UTIs), renal function, and problems with bowel and bladder regimens. Provide prescriptions for routine bowel medications, treatment of recurring UTIs, monitor for adherence to bowel and bladder management program and changes in bowel/bladder function. (Bowel Function and Care Guidelines, Urology Guidelines) o Skin breakdown and pressure injury. 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. (Mobility Guidelines, Skin Care Guidelines) o Adaptive equipment needs, including for orthoses, crutches, walkers, and wheelchairs. Make referrals to necessary subspecialists. (clinical consensus) (Mobility Guidelines) o Osteoporosis. Encourage weight-bearing activities for at least one hour per day to promote bone health as well as for its social benefits. (clinical consensus) (Mobility Guidelines, Orthopedics Guidelines, Physical Activity Guidelines)
Transition Guidelines
Family Functioning Guidelines
Mental Health Guidelines
Quality of Life GuidelinesPsychosocial well-being
Continence/mobility
Pain
Measurement
Self Management and Independence Guidelines
o Evaluate the potential to eventually live independently (for those later in this age range) and connect them with housing resources (e.g. Centers for Independent Living). (clinical consensus)
Neuropsychology Guidelines
Neurosurgery GuidelinesPatient/Family
1. Follow children ages 13-17 years 11 months at 12-month intervals in a Spina Bifida clinic. (clinical consensus) 2. Begin to address transition to adult neurosurgical provider early in teen years to promote self-knowledge and functional independence and encourage teen self-monitoring. (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 changes, and increasing orthopedic deformities and/or progressive scoliosis). Follow the child clinically to observe for these signs. 4. 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. (clinical consensus) 5. 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 observe for these signs. 6. Teach or review with the family and child and urge them to observe for signs of syringomyelia (back pain and sensorimotor changes in arms and hands). Follow the child clinically to observing for these signs. (clinical consensus) 7. 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. (clinical consensus) Mobility GuidelinesAssess neurologic level and strength changes using standardized assessment tools at each clinic visit. Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal changes. (clinical consensus) Monitor ambulation or wheelchair mobility. If ambulation is declining, suggest alternate mobility options. (clinical consensus) Continue therapy or home programs to maintain mobility goals, emphasizing flexibility, range of motion, and overall strengthening. (clinical consensus) Verify that the teenager knows how to check insensate skin, especially after activity, and how to ameliorate friction and pressure. (clinical consensus) (Integument (Skin) Guidelines) Optimize gait with supportive orthoses or devices for balance. Monitor for torque forces on the joints or excessive forces in the upper body. Explore the best mobility option with the teenager and have a frank discussion about the risks and benefits of all systems. (clinical consensus) Monitor for a secondary injury and, if identified implement a prevention program. Areas at risk of secondary injuries for children who walk are the knees and ankles and the shoulders and wrists in those who use a wheelchair. (Orthopedic Guidelines) Recommend therapy interventions to maintain mobility, if there is a change in functional status. (clinical consensus) Collaborate with orthopedic specialists to monitor for age specific musculoskeletal problems. (Orthopedic Guidelines) Orthopedics Guidelines
Physical Activity
Men’s Health Guidelines
Sexual Health and Education Guidelines
Urology Guidelines
Women’s Health Guidelines
Bowel Function and Care Guidelines
Endocrine: Puberty and Precocious Puberty Guidelines
Integument ( Skin) Guidelines
Latex and Latex Allergy Guidelines
▪ Increased pressure on the skin when seated for long periods of time (such as when using a wheelchair) may result in skin breakdown ▪ Weight gain alongside existing scoliosis or kyphosis may result in additional breathing problems.
▪ 1-3 years: 19g ▪ 4-8 years: 25g ▪ 9-13 years: female–26g, male–31g ▪ 14-18 years: female–26g, male–38g
▪ 100 mL/kg for the first 10 kg body weight ▪ + 50 mL/kg for the next 10 kg body weight ▪ + 20 mL for every kilogram of body weight over 20 kg
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