Anticipatory Guidance

• Routine pediatric care is important. This includes immunizations, car seat safety, water safety, nutrition. 
• Counseling would be based on the issues the child is having, such as having a shunt, bowel and bladder management, mobility impairments, orthopaedic concerns and developmental delay. 
• Guide families on latex allergies, chronic urinary and bowel issues, problems with shunts, skin ulcers, overweight/obesity risk. Preventative counseling should include strategies for physical activity. 
• Monitor for neglect and/or abuse.
• Monitor for caregiver burnout.

• Advise families about the importance of routine pediatric care including immunizations, car seats, water safety, nutrition. 
• Counseling would be based on the issues the child is having, such as having a shunt, bowel and bladder management, mobility impairments, orthopedic concerns and developmental delay. Referral for evaluation by a developmental specialist may be indicated. 
• Guide families on latex allergies, chronic urinary and bowel issues, problems with shunts, skin ulcers, overweight/obesity risk. Preventative counseling should include strategies for physical activity. 
• Monitor for neglect and/or abuse.
• Monitor for caregiver burnout.

• Advise families about the importance of routine care including immunizations, car seat safety, water safety, nutrition. 
• Children with spina bifida may have developmental delays and/or learning challenges. At 4 years of age, children with spina bifida should have a neuropsychological evaluation before the start of school. 
• Counseling should be condition specific such as having a shunt, bowel and bladder management, mobility impairments, orthopedic concerns and developmental delays. 
• Guide families on latex allergies, chronic urinary and bowel issues, problems with shunts, skin ulcers, overweight/obesity risk. Preventative counseling should include strategies for physical activity. 
• Monitor for neglect and/or abuse.
• Monitor for caregiver burnout.

Be sure your patient has routine well-visits and age-appropriate health promotion and preventative services including screenings for:

• Ophthalmic (eye) complications such as nystagmus, strabismus, optic atrophy and papilledema (common in children with spina bifida). Hearing and Vision screenings should occur yearly and as needed. Vision and eye movement changes may be a sign of shunt malfunction.
• Age-appropriate immunizations
• Dental care
• Hypertension
• Overweight/obesity/metabolic syndrome, use adjusted arm span or recumbent height measurement and wheelchair scale for those who are wheelchair dependent. 
• Motor vehicle and wheelchair safety, may need an adaptive care seat
• Pressure ulcer prevention — encourage daily skin checks
• Provide information about adaptive physical and recreational activities based on the child’s mobility
• Depression, anxiety and the need for counseling
• School, peer relationships and social isolation
• Sexual development, menarche (menstrual period) and sexual safety
• Abuse or neglect
• Caregiver burnout

Be sure your patient has routine well-visits and age-appropriate health promotion and preventative services including screenings for:

• Ophthalmic (eye) complications such as nystagmus, strabismus, optic atrophy and papilledema (common in children with spina bifida). Hearing and vision screenings should occur yearly and as needed. Vision and eye movement changes may be a sign of shunt malfunction.
• Age-appropriate immunizations
• Dental care
• Hypertension
• Overweight/obesity/metabolic syndrome, use adjusted arm span or recumbent height measurement and wheelchair scale for those who are wheelchair dependent. 
• Motor vehicle and wheelchair safety-may, need an adaptive care seat
• Pressure ulcer prevention — encourage daily skin checks
• Provide information about adaptive physical and recreational activities based on the child’s mobility
• Depression, anxiety and the need for counseling- yearly PHQ-9 screening
• School, peer relationships and social isolation.
• Sexual development, menarche (menstrual period) and sexual safety
• Abuse or neglect
• Caregiver burnout

Begin to promote self-management and independence with health care and home activities. Check for the ability to assist with bowel, bladder and skin-check regimens. 

Be sure the adult patient is receiving age-appropriate health promotion and preventative services including screening and counseling for:

• Ophthalmic (eye) complications such as nystagmus, strabismus, optic atrophy and papilledema (common in children with spina bifida). Hearing and vision screenings should occur yearly and as needed. Vision and eye movement changes may be a sign of shunt malfunction.
• Age-appropriate immunizations
• Dental care
• Hypertension
• Overweight/obesity/metabolic syndrome, use adjusted arm span or recumbent height measurement and wheelchair scale for those who are wheelchair dependent. 
• Screening for metabolic syndrome, lipid disorders, diabetes
• Cancer screening
• Accommodations for physical and intellectual disabilities
• Motor vehicle and wheelchair safety, may need an adaptive car seat
• Fall prevention-ensure safe transfers and assess mobility
• Adaptive physical activity
• Smoking and Illicit drug use
• Reproductive health counseling, evaluatingfor sexual function concerns. Counseling about family planning and possible fertility and genetic counseling can be provided for individuals interested in pregnancy. Recommend prenatal vitamins and 4 mg of folic acid prior to conception. 
• Depression, anxiety and the need for counseling
• Abuse, neglect or violence
• Caregiver burnout

Providers should:

• Promote self-management for health, health care services and home activities
• Monitor the adult’s ability to perform routine care needs such as bowel, bladder and skin-check regimens; their ability to detect changes in their health status; and their awareness of their need for provider services
• Promote care coordination among subspecialists and primary care providers