Health Guide for Parents
of Children Living with
Spina Bifida
Marlene Lutkenhoff, RN, MSN,
Cincinnati Children’s Hospital Medical
Chair, Editorial Review Board
Health Guide for Parents of Children
Living with Spina Bifida
Sections in the Health Guide
What to Expect
Neurological Function and Progress
Urologic and Bowel Function and Progress
Orthopedic Function and Progress
General Health Promotion
Mental Health
Social Development
Learning
Each section covers the following
periods in your child’s life:
Birth to Age 4
School Age Children (5 to 11 years)
Teens (12 to 18 years)
Health Guide for Parents of Children
Living with Spina Bifida
What to Expect
• Birth to Age 4
– What and why
– Parenting Tips
• School Age Children (5 to 11 years)
• Teens (12 to 18 years)
Health Guide for Parents of Children
Living with Spina Bifida
Neurological Function and Progress
• Birth to Age 4
– Types of Spina Bifida
– Pre-Surgical and Post-Surgical Care
• School Age Children (5 to 11 years)
– Signs and symptoms of shunt malfunction
– Tethered Cord Syndrome
• Teens (12 to 18 years)
– Headaches
Health Guide for Parents of Children
Living with Spina Bifida
Urologic and Bowel Function and Progress
• Birth to Age 4
– Urinary Tract Infections
– Surgeries
– Catheterization
• School Age Children (5 to 11 years)
– Surgeries
• Teens (12 to 18 years)
– Transition skills
Health Guide for Parents of Children
Living with Spina Bifida
Orthopedic Function and Progress
• Birth to Age 4
– Devices to help with mobility
• School Age Children (5 to 11 years)
– Surgeries
• Teens (12 to 18 years)
– Parenting Tips
Health Guide for Parents of Children
Living with Spina Bifida
General Health Promotion
• Birth to Age 4
– Family Health
– Skin Care
• School Age Children (5 to 11 years)
– Healthy Diet and Exercise
• Teens (12 to 18 years)
– Weight Maintenance, Healthy Diet and Exercise
Health Guide for Parents of Children
Living with Spina Bifida
Mental Health
• Birth to Age 4
– Play
– Self-care
• School Age Children (5 to 11 years)
– Challenges
– Self-care
– Monitor for signs of trouble
• Teens (12 to 18 years)
– Independence
Health Guide for Parents of Children
Living with Spina Bifida
Social Development
• Birth to Age 4
– Factors that encourage / challenge
• School Age Children (5 to 11 years)
– Sexuality
• Teens (12 to 18 years)
– Sexual functioning
Health Guide for Parents of Children
Living with Spina Bifida
Learning
• Birth to Age 4
– Transition to preschool
– Parent advocacy
• School Age Children (5 to 11 years)
– Learning challenges
• Teens (12 to 18 years)
– Self-care skills
Health Guide for Parents of Children
Living with Spina Bifida
Appendices
Resources
Glossary
Health Care Record for Parents
Health Guide for Parents of Children
Living with Spina Bifida
Resources – Appendix A
Spina Bifida Association Group Members (chapters)
Spina Bifida Clinics
Financial Resources
Publications
Health Guide for Parents of Children
Living with Spina Bifida
Glossary – Appendix B
Key terms and definitions
Health Guide for Parents of Children
Living with Spina Bifida
Health Care Record for Parents- Appendix C
Health Care Record will help you:
– Organize your health information in a central place.
– Keep a record of the health care services you receive.
– Track changes in your medications and treatments.
– Tell health care providers about your medical condition.
– Prepare for and make health care appointments.
Health Guide for Parents of Children
Living with Spina Bifida
Health Care Record for Parents- Appendix C
Update the Health Care Record:
– Every year or every six months
– After any changes in your child’s condition, treatment,
medications, health care providers, or if your child has any
major procedures.
Health Guide for Parents of Children
Living with Spina Bifida
Health Care Record for Parents- Appendix C
– Take the notebook with you when visiting health care
providers.
– Make copies to keep on file at home and with your health
care providers.
Health Guide for Parents of Children
Living with Spina Bifida
Health Care Record for Parents- Appendix C
– Personal Information
– Family History
– Health Care Providers
– Insurance Information
– Equipment/Supplies
– Medication
– Urinary Tract Infection Tracking Form
– Bowel Management Tracking Form
Health Guide for Parents of Children
Living with Spina Bifida
Health Care Record for Parents- Appendix C
– Health Care Appointment Scheduler
– Screening and Diagnostic Test Checklist
– Spina Bifida Specific Tests
– Suggestions for Hospital Stay
• Tracking forms for surgical and non-surgical hospital stays
Health Guide for Parents of Children
Living with Spina Bifida
Second in a series of health guides for the Spina Bifida
Community
Guide for teens to follow in 2008
Health Guide for Parents of Children
Living with Spina Bifida
More Information:
Marlene Lutkenhoff, RN, MSN
Chair, Editorial Review Committee
Cincinnati Children’s Hospital Medical Center
Email: marlene.lutkenhoff@chmcc.org