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The Down Syndrome Program at Boston Children’s Hospital offers comprehensive services for parents and children with Down syndrome. We can individualize our services for families as needed, but we wanted to share below the basic information of what to expect in our clinics and appointments.
ALL APPOINTMENTS TAKE PLACE ON FEGAN 10TH FLOOR
Families of newborns or young babies are welcome to come in for an individual appointment with one of our DS program providers. This is typically a one hour appointment where the doctor will review medical history, discuss development, and answer any questions the family may have. We consider this an introductory visit prior to joining our Thursday morning clinic for children ages 8 months to 3 years old. We ask that families have their pediatrician fax newborn discharge summary reports, blood work results, and any other important information about their baby to us prior to the visit.
The Down Syndrome Program clinic for children from 7 months to 3 years provides a comprehensive evaluation using an interdisciplinary team approach. With the exception of audiology, the interdisciplinary team convenes in clinic on Thursday mornings from 8:30-12:30. Throughout the course of the morning, each child has individual appointments with specialists in developmental pediatrics, nutrition, physical therapy, speech pathology with expertise in feeding and swallowing, and dentistry. Immediately after seeing the team, the family proceeds to audiology where the child is seen by an audiologist with particular interest and experience in working with children with Down syndrome. Children are seen in this clinic twice a year.
For children ages 3 to 21 years, we offer an individualized approach. We provide a comprehensive developmental pediatrics visit on an approximately annual basis or more often as needed. Before scheduling the clinic visit, the Program Coordinator speaks with the family to determine each child's needs and family preferences. We can coordinate same-day appointments for other specialty care such as orthodontics, audiology, cardiology, physical therapy, ophthalmology, nutrition, etc. This is individualized for each family based on travel distances, schedules, and the child's tolerance for multiple visits in one day. We work with each family to make their visits as efficient and accommodating as possible.
For all of our clinics, the family is guided through the day by the Program Coordinator who is also the parent of a child with Down syndrome as well as the Patient Liaison who is a young adult with Down syndrome. The Program Coordinator and the Patient Liaison provide information, resources, and support as well as serving as role models and sharing their personal experiences.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”