For anyone who has watched the popular Netflix series “Stranger Things,” this might sound familiar to you. Cleidocranial dysplasia (CCD) affects both one of the main characters and the actor who plays him. The popularity of the show has raised much awareness about the condition, which is great for those kids in our area who do have CCD.
CCD affects development of the bones and teeth, and ranges from mild to severe even among relatives. Usually, individuals have underdeveloped or missing collarbones or clavicles. This means that they can bring their shoulders unusually close together or even make them touch. Their skulls may also have delayed maturation, such as delayed closing of the plates of the skull, or soft spots that last past babyhood. Finally, individuals may have delayed growth of adult teeth, extra or unusually-shaped teeth, and misalignment of the jaws.
Treatment
Children with CCD require attentive care from both parents and health care providers based on how their condition affects them specifically. Other than treating the complications of CCD, individuals have a normal life expectancy and can live ordinary, fulfilling lives.
Dental Treatment
Find a dental clinic familiar with CCD and plan procedures early where you can. Dental treatment for CCD is usually to improve the look of the teeth and jaw, or to enhance chewing.
Speech Therapy
Children with CCD may need speech therapy during the dental treatment process, or in general to manage their condition.
Infection Treatment
People with CCD are more prone to ear and sinus infections due to their condition. They will need timely treatment to keep healthy.
Helmet Safety
Since open skull sutures and soft spots may affect your child, make sure he or she wears helmets. This is already important for sports like bicycling, skateboarding, and baseball, but becomes extra vital in this case.
Pregnancy Monitoring
Women who have CCD and who are pregnant may need a Caesarian section at delivery. This is because they have a narrow or abnormal pelvis and pelvic bones. Pregnant women should have careful monitoring through their pregnancy to plan for such an option.
Coping with CCD
Individuals with CCD have active, healthy physical and social lives, with no difference in life expectancy than someone without. Children, though, may struggle if they cannot find activities with other children their age. Encourage their healthy friendships and adapt their surroundings to help them become independent. Talk to your doctor if you or your child need advice or help.