Private Visit With Experts

Every family attending the conference is offered a private consultation with one of the expert doctors. There is no additional charge for the appointment.

When Is The Appointment?

Appointments traditionally occur on Friday afternoon between 1:00 PM and 5:00 PM and Sunday afternoon between 1:00 PM and 5:00 PM. They are 20 minutes long. After you have registered for the conference and we have verified your payment we will send you an email invitation to reserve your appointment with the doctor of your choice. You will receive an email reminder a few days before the appointment.

What Happens At The Appointment?

The consultations are non-invasive. The doctor may measure your child’s head circumference and height and take a photo of your child. You and the doctor will review your child’s medical and developmental history and discuss any questions and concerns you may have. The doctor will focus on the items that are most important to you. You can still have an appointment even if you don’t bring your child with Sotos syndrome to the conference.

What To Bring

If this is your first appointment, it is helpful to bring the following items. Don’t worry if you don’t have all of them. The doctors can still provide lots of useful advice just by meeting with your child and talking with you.

  • Photos at birth, 1, 3, 6 and 9 months and 1, 2 and 3 years of age
  • Photos of parents, grand-parents and siblings
  • Growth charts for head circumference and height
  • Results from previous tests such as genetic testing, blood tests, bone age scans
  • History of medical and developmental issues
  • Any available MRI films, particularly of the head. The actual films or CD of the scans are needed, not just the written reports, since Dr. Schaefer looks for very subtle features that other people may have missed. The hospital should lend these to you at no charge.

These are not official medical visits. The expert doctors can not practice medicine in locations where they are not licensed. These appointments are consultations to answer questions, not to make official diagnoses or recommendations.