What are the Osteogenesis Imperfecta Foundation recommendations on caring for children with osteogenesis imperfecta (OI)?

Updated: Feb 24, 2020
  • Author: Manoj Ramachandran, MBBS, MRCS, FRCS; Chief Editor: Harris Gellman, MD  more...
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Answer

The following tips have been developed by the Osteogenesis Imperfecta Foundation for taking care of children with OI:

  • Do not be afraid to touch or hold an infant with OI, but be careful; to lift the infant, spread your fingers apart and put one hand between the legs and under the buttocks, and place the other hand behind the shoulders, neck, and head
  • Never lift a child with OI by holding him or her under the armpits
  • When changing a diaper, do not pull on arms or legs or, in those with severe OI, lift the legs by the ankles
  • Select an infant car seat that reclines; it should be easy to place or remove your child in the seat; consider padding the seat with foam and using a layer of foam between your child and the harness
  • Be sure your stroller is large enough to accommodate casts; do not use a sling- or umbrella-type stroller
  • Follow your doctor's instructions carefully, especially with regard to cast care and mobility exercises; swimming and walking are often recommended as safe exercises
  • Adults with OI should avoid activities such as smoking, drinking, and taking steroids because they have a negative impact on bone density
  • Increasing awareness of child abuse and a lack of awareness about OI may lead to inaccurate conclusions about a family situation; always have a letter from your family doctor and a copy of your child's medical records handy

A crucial point to stress is that parents should not feel guilty if their child breaks a bone. Children must grow and develop, and fractures can occur despite all the care.


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