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. 2020 Dec 22;13(4):467–477. doi: 10.3233/PRM-200782

Table 2, continued
Age group Guidelines Evidence
1 yr–2 yrs 11 months
  • 1.
    Follow children of 1–2 years 11 months at 6-month intervals for routine care in the spina bifida clinic and remain available in event of clinical change.
 Clinical Consensus
  • 2.
    Teach families the signs of acute shunt failure (headache, vomiting, and lethargy/sleepiness) and chronic shunt failure (accelerated head growth, loss of developmental milestones or neurological deterioration). Follow the child clinically to observe for these signs.
 Clinical Consensus
  • 3.
    Teach families the signs of brain stem failure that might occur in this age range (poor control of oral secretions, swallowing dysfunction, stridor, and impaired language acquisition). Follow the child clinically to observe for these signs.
 Clinical Consensus
  • 4.
    Teach families the signs of TSC (back pain, declining lower extremity sensorimotor function). Follow the child clinically to observe for these signs.
 [42–43]
  • 5.
    Use adjunctive studies judiciously (imaging such as MRI/CT, urodynamics, and sleep and swallow studies) to augment clinical decision-making according to clinical experience and judgment.
 Clinical consensus
3–5 yrs
  • 1.
    Follow children aged 3–5 years 11 months at intervals of 6–12 months in the spina bifida clinic.
 Clinical consensus
11 months
  • 2.
    Teach families about and review the signs of acute shunt failure (headache, vomiting, and lethargy/sleepiness), and chronic shunt failure (low grade recurring headache and neck pain, loss of developmental milestones). Follow the child clinically to observe for these signs.
 Clinical consensus
  • 3.
    Teach families the signs of brain stem dysfunction that might occur in this age range (poor control of oral secretions, swallowing dysfunction, stridor, and impaired language acquisition). Follow the child clinically observing for these signs.
 Clinical consensus
  • 4.
    Teach families the signs of TSC (back pain, declining lower extremity sensorimotor function) and urologic dysfunction. Follow the child clinically to observe for these signs.
 [40–43]
  • 5.
    Teach families of signs of syringomyelia (back pain, sensory changes in hands). Follow the child clinically to observe for these signs.
 Clinical consensus
  • 6.
    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
6–12 yrs
  • 1.
    Follow children ages 6–12 years 11 months at 12-month intervals in the spina bifida clinic.
 Clinical consensus
11 months
  • 2.
    Review the signs of acute shunt failure (headache, neck pain, vomiting, and lethargy/sleepiness), and chronic shunt failure (recurring low-grade headache and neck pain; loss of developmental milestones; cognitive, behavioral, or neurological decline; and orthopedic or urological regression) with the family. Follow the child clinically to observe for these signs.
 [2, 3, 5, 30, 32, 34]
  • 3.
    Teach or review with the family and urge them to observe for the signs of TSC (back pain, declining lower extremity sensorimotor function, bladder or bowel control decline and progressive orthopedic deformities and/or scoliosis). Follow the child clinically to observe for these signs.
 [42–43]
  • 4.
    Teach or review with the signs of syringomyelia (neck or back pain and sensorimotor changes in arms and hands). Follow clinically to observe for these signs.
 Clinical consensus
  • 5.
    Review the signs of brain stem dysfunction that might occur in this age range with the family. Follow clinically to observe for these signs.
 Clinical consensus
  • 6.
    Use adjunctive studies to augment clinical decision-making, during routine visits with the well child judiciously and according to experience, preference, and best clinical judgment.
 Clinical consensus
13–17 yrs
  • 1.
    Follow children ages 13–17 years 11 months at 12-month intervals in a spina bifida clinic.
Clinical consensus
11 months
  • 2.
    Begin to address transition to adult neurosurgical provider early in teen years.
 Transition Guidelines
  • 3.
    Review and observe for signs of acute shunt failure and chronic shunt failure.
 [2, 3, 5, 30, 32]
  • 4.
    Review with the family and child the signs of brain stem dysfunction. Follow the child clinically to observe for these signs.
 Clinical consensus
  • 5.
    Teach/review with the family and child signs of TSC. Follow the child clinically to observe for these signs.
 Clinical consensus
  • 6.
    Teach/review with the family and child signs of syringomyelia. Follow them clinically to observe for these signs.
 Clinical consensus
  • 7.
    Use adjunctive studies judiciously during routine visits with the well child, according to experience, preference and best clinical judgment, to augment clinical decision-making.
 Clinical consensus
18+ years
  • 1.
    Follow adults of 18+ years at 12-month intervals in an adult Spina Bifida clinic setting.
 Clinical consensus
  • 2.
    Assist the patient/family in identifying an adult neurosurgery provider.
 Clinical consensus
  • 3.
    Facilitate and support completion of transitional care.
 Transition Guidelines
  • 4.
    Review with the adult and family the signs of acute shunt failure and chronic shunt failure. Follow clinically to observe for these signs.
 Clinical consensus