Caring for Adolescents with Down Syndrome

Down syndrome is a genetic condition where a baby is born with three, rather than two, copies of chromosome 21. It's the most frequently occurring chromosomal abnormality, impacting one in every 691 infants born in the United States each year. Pediatric practitioners need to understand how to present a diagnosis with honesty and empathy, and be prepared to educate parents, particularly where developmental and educational milestones are concerned.

Listen to an expert on Down syndrome in kids discuss best practices for care

Caring for adolescents with Down syndrome can be complicated, but understanding the condition will empower providers to support babies and their families effectively.

Francis Hickey, MD, was the Medical Director of the Anna and John J. Sie Center for Down Syndrome. He joins us for today's episode of Charting Pediatrics to discuss primary care for kids and adolescents with Down syndrome.

In this episode, our expert shares:

• Recommendations for making an initial Down syndrome diagnosis
• The importance of congratulating parents on the birth of their child
• Helpful tips for siblings of adolescents with Down syndrome
• What pediatricians should expect for growth and developmental milestones in kids with Down syndrome
• The importance of early visual stimulation for children with Down syndrome
• Why it's more important to focus on progress rather than on hitting specific goals
• Common Down syndrome-related gastrointestinal, ear, nose and throat, pulmonary and orthopedic problems to have on the radar
• The three most important screenings for Down syndrome patients: thyroid, vision and hearing
• Endocrine and autoimmune challenges faced by children with Down syndrome
• How to recognize the onset of autism in children with Down syndrome
• Significant concerns pediatricians should be aware of when adolescents with Down syndrome move into puberty
• Practical references available for primary care providers
• Special accommodations and educational advocacy for children with Down syndrome in the public school system

Common problems pediatric providers should be aware of in kids with Down syndrome

As Dr. Hickey explains, pediatric primary care physicians should aim to keep their messaging as positive as possible. Focusing on every child's progress is a great way to accomplish this. Providers are also encouraged to share resources on Down syndrome with families to help them better understand the unique strengths and gifts their child possesses.

Further, pediatricians are tasked with answering difficult questions regarding specific health issues in young patients with Down syndrome. Some of these issues include gastrointestinal problems, autoimmune problems, endocrine issues and various additional concerns. This is why our podcast also explores practical references available for primary care providers.

Treating adolescents with Down syndrome at Children's Colorado

Children who have Down syndrome have unique health needs. At Children's Colorado, these patients are treated by the team at our Sie Center for Down Syndrome. Providers offer comprehensive care services to children with Down syndrome by coordinating medical care and therapy, including speech, physical and occupational therapies. Our team also includes feeding therapists, a psychologist and a child education specialist.