Bone, Joint and Muscle Conditions
About Your Craniosynostosis Visit
What Should I Bring for My Appointment?
Bring copies of any X-rays, records from your regular doctor about your child's overall health and growth, photographs of your child that show how your child's head shape has changed over time and photographs of other family members who you think have a head shape similar to your child's.
You may be scheduled to see a number of different providers over a half day or longer, depending on your child's needs.
It will be helpful if you can bring snacks, extra diapers and a book or toy that your child particularly enjoys to keep them busy.
Who Will I See During My Appointment?
Your first visit to our clinic will involve an initial evaluation by a pediatrician who is trained in craniofacial care, a craniofacial nurse and a social worker.
Depending on your regular doctor's referral, you may also be scheduled to see a craniofacial plastic surgeon and/or a neurosurgeon during this initial appointment.
If your child is diagnosed with craniosynostosis, they will be followed by a multidisciplinary team that includes a craniofacial plastic surgeon, a pediatric neurosurgeon, a pediatrician, a nurse and a social worker.
Children with more complex needs may have additional care providers and specialists added to their team.
What May Happen During My Appointments?
If the physicians on your craniofacial team are concerned that your child has craniosynostosis, they will recommend that a CT scan of the head be performed in the future.
A CT scan is an X-ray procedure that takes a cross-sectional view of the body, which is enhanced by a computer. It is usually not possible to obtain a CT scan on the day of your initial evaluation.
The timing of the CT scan will depend on your child's age, diagnosis and when surgery would possibly be performed.
If the diagnosis of craniosynostosis is clear to the doctors in the craniofacial clinic, your team may recommend waiting to obtain a CT scan until closer to the time of surgery.