Living with Osteogenesis Imperfecta

At Children’s Orthopaedics of Atlanta, we understand that having a child with Osteogenesis Imperfecta can be overwhelming and scary. We’re here to help you and your child find the best route to healthy living. We’ve compiled some more information below about what to expect with OI and how to approach certain situations.

What to expect when your child has Osteogenesis Imperfecta

There are numerous types of OI, from mild to severe, so no child’s situation is the same. However, there are some ailments that result because of the collagen disorder in the body. These can include:

Scoliosis

​Curving of the spine can occur because of a weakening in the bones. In addition to Scoliosis, fractures and loosening of the ligaments surrounding the spine can also occur.

Skull abnormalities

In more severe types of OI, the skull is weakened. As a result, these children (and adults) will sometimes have unusually large heads and their faces can be flattened and appear triangular.

Short stature

There is a direct relationship between the severity of OI and the amount that it restricts a person’s height. Scoliosis of the spine can make the trunk shorter as the spine twists, curving of the bones and fractures of the growth areas of bone can severely restrict ultimate height.

Dentinogenesis Imperfecta

Type I collagen found in a person’s teeth is called Dentin. If the dentin becomes abnormal, teeth become weaker, and they are more prone to rapid wear, breakage and tooth loss. Approximately 30% of all children with OI have significant dental issues. Teeth may appear brown as the enamel has worn away. At COA, we recommend that all children with OI be screened by a pediatric dentist either when the first tooth erupts or by age 1.

Blue Sclera

A child’s eye can appear translucent because of a collagen deficiency in their cornea. As the eye becomes more translucent, it reveals underlying pigments and blood vessels; thus, the whites of the eyes actually appear blue. Those with OI should have frequent visits with the eye doctor (ophthalmologist). They are at higher risk for cataracts, glaucoma, and even retinal detachment. There problems should be discussed in greater detail with your eye doctor. 

Hearing loss

Small fractures of the ear bones can lead to hearing loss, and almost half of adults with OI have some type of hearing loss. Recommendations at this time are for children to have screening by a licensed pediatric audiologist at ages 3 and 10.

Heart and Blood Vessel Problems

OI can cause expansion of the aorta, brain blood vessels, and heart chambers. Consequently, during surgery, children and adults with OI may have increased tendencies to bleed.

Contact COA today for more questions about OI or if you have a child that is experiencing any of these symptoms.


Fractures in Children with Osteogenesis Imperfecta

 

Minimal Cast Time

When a child with OI breaks a bone, the care is very different compared to other children. The key is to remember that the more your child walks and is active, the stronger their bones are. Therefore, if your child needs a cast, we’ll try to minimize the ‘in cast’ time as much as possible so the bone will not become too fragile.

Walking Casts

To minimize the time your child is not walking, we usually use walking casts and walking braces (when applicable) if your child is comfortable with this type of treatment.

Cast Kits

For children with more moderate to severe forms of OI, we can provide a “cast kit” for a nominal fee. This kit will have casting material that is very user friendly (known as soft cast), along with cast padding and a stockingnette.  Hopefully, this cast that you make at home will provide your child enough comfort so that he or she does not need to go the ER. Please feel free to discuss these cast kits with your COA doctor.

What to do if your child has a broken bone…

If your child has broken a bone, and you are not sure whether or not you should go to the ER or come to our office for medical attention.

Call us at (404) 255-1933 or schedule online to make a same day appointment.

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