Parents

In addition to this page, please be sure to explore other sections of our website. Every section contains items of interest to Parents of Children who have OI.

• Information About Osteogenesis Imperfecta links to a summary of information about OI, Types of OI and common myths.
• Resources links to many useful pages including the Clinic Directory which can help you locate experienced medical care and Links of Interest for important information on related programs and services like the OI Registry and The National Patient Travel Center.
• Support Networks links to the list of support network groups in the United States. In addition to OIF Support Networks, the following are volunteer managed support resources designed for parents:

OI Parents Facebook
A volunteer managed Facebook page for OI parents.

OI Dads Facebook
A volunteer managed Facebook page for fathers of children with OI.

OI Parents Yahoo Group
A volunteer managed email list dedicated to helping parents in the care and raising of their OI child.

The OI Foundation’s National Information Center staff is available to answer your questions and help locate resources.

Materials for All Parents

• The Information Center contains fact sheets on many topics related to understanding and managing OI. Here is a sample of topics Parents often ask about.
• Social & Emotional Issues of Living with OI
• Bisphosphonate Questions and Answers
• Nutrition
• Planning for a Child’s Surgery
• Handle with Care Poster
• Books and Brochures
• NEW! Guide to Osteogenesis Imperfecta for Pediatricians and Family Practice Physicians -  This 30 page booklet was written as an introduction to medical management of OI for doctors who are meeting their first OI patient or who care for only a few people who have OI. Designed for easy reference it covers basic information about OI and its diagnosis, medical management, treatments, clinical issues, general health care issues, and infant care. A discussion on providing social and emotional support and a resource section are also included. The booklet was prepared as a joint project between the OI Foundation and the National Institutes of Health Osteoporosis and Related Bone Diseases National Resource Center. Dr. Francis Glorieux, Director of the OI Program at the Shriners Hospital for Children in Montreal Canada, served as the editor. Families and other health care providers may also find it useful. The Guide to OI is available in print, and as a PDF.
• Growing Up with OI: A Guide for Families and Caregivers - This book contains a wealth of information about OI and about raising a child who has OI. It is available through the Online Store
• Children with OI: Strategies to Enhance Performance - This book was written for parents and rehabilitation specialists. The chapters on water therapy for infants, equipment, sports and recreation and the section on Internet resources are particularly useful for parents.  It is available through the Online Store.
• Osteogenesis Imperfecta: An Introduction for Medical Professionals, Individuals, & Families - This short brochure is useful for explaining OI to family members, friends and school personnel. It is available free of charge through the Online Store or as a PDF.
• Preventing Child Abuse Accusations
  Parents of infants and toddlers who have been diagnosed with OI can take steps to avoid being falsely accused of abusing their child.
• Carry documentation of the diagnosis in the form of a letter from your child’s primary care physician or orthopedist that includes weekend and night-time contact information
• Meet with the supervising physician of the emergency department at their local hospital
• Plan ahead with your child’s orthopedist about how to handle fractures that occur at night, on weekends or over holidays when emergency rooms are often under staffed

Materials for Parents of Infants

• Infant Care Suggestions for Parents is a special fact sheet that covers safe ways to handle your baby, and other baby care topics including car seats, cribs, feeding and diapering.
• Caring for Infants and Children with OI is a booklet that covers topics about child care from birth through age 3 years. It is available free of charge through the Online Store or can be downloaded here as a PDF.

Materials for Parents of Older Children

• Facts Sheets
• Transition from Pediatric to Adult Care
• Summer Camps
• Books
• Growing Up with OI: A Guide for Children
  This book was written for elementary school readers. It answers questions about OI, and offers suggestions for how to handle some of the common problems such as making friends and getting along with brothers and sisters.  It is available through the Online Store.

Education Related Materials

• Fact Sheets (see Information Center)
• Education Issues
• Early Intervention Programs
• Preparing to Send My Child to School
• College Search Resources
• Books and Booklets
• Plan for Success
  This booklet for parents and teachers is available free of charge through the Online Store and can be downloaded here as a PDF.

º Emily’s First Day
This picture book and teacher guide helps introduce mild or Type I OI to children in kindergarten and first grade it is available through the Online Store.

• Jason’s First Day!
  This picture book and teacher guide helps introduce moderate and moderately severe OI to children in kindergarten and first grade. It is available through the Online Store.

Information about OI for Children

Growing Up with OI: A Guide for Children
This book was written for elementary school readers. It answers questions about OI, and offers suggestions for how to handle some of the common problems such as making friends, and getting along with brothers and sisters.  It is available through the Online Store.

What is Osteogenesis Imperfecta?
This is a one page fact sheet that answers questions about OI and how it is treated. It was written with the help of a group of 4th grade students.