How is Down syndrome treated in adolescents and young adults?

Updated: May 18, 2020
  • Author: Gratias Tom Mundakel, MBBS, DCH; Chief Editor: Maria Descartes, MD  more...
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In adolescents and young adults with Down syndrome, the following monitoring measures are indicated [2] :

  • Perform annual audiologic evaluation

  • Perform ophthalmologic evaluations every 3 years for keratoconus or corneal opacities or cataracts

Manifestations of the syndrome and associated conditions must be evaluated and addressed on an ongoing basis, as follows:

  • Treat dermatologic issues, such as folliculitis, xerosis, atopic dermatitis, seborrheic dermatitis, fungal infections of skin and nails, vitiligo, and alopecia

  • Prevent obesity by decreasing the patient’s caloric intake and increasing activity (social and leisure)

  • Screen for celiac disease (symptoms such as constipation, diarrhea, bloating, poor growth, or weight loss), and treat the patient with a gluten-free diet

  • Address any swallowing difficulties that persist through the adolescent years

  • Provide antibiotic prophylaxis during dental and surgical procedures in the presence of mitral valve prolapse

  • Consider bone marrow transplantation if leukemia occurs

  • Discuss sleep apnea, treat airway obstruction medically and surgically.

  • Pay special attention to perioperative modalities because of atlantoaxial instability and problems with the respiratory system

  • Screen for hypothyroidism and diabetes mellitus

  • Manage neurologic problems, including mental retardation, hypotonia, seizures, and strokes

  • Continue speech and language therapy, with a focus on expressive language and intelligibility

  • Evaluate and treat behavioral problems, such as disruptive behavior disorders, stereotypic behaviors, phobias, elimination difficulties, autism, eating problems, self-injurious behavior, and Tourette syndrome; evaluate and treat psychiatric disorders, such as depression and self-talk

  • Examine annually to check for development of acquired heart valve disease; perform an echocardiogram if a new murmur or gallop or symptoms of heart failure develop.

  • Continue subacute bacterial endocarditis prophylaxis in adolescents with cardiac defects; during adolescence, an additional 2% of patients die of complications of congenital heart disease, infections, leukemia, and accidents

  • Counsel regarding the importance of protecting the cervical spine during anesthetic or surgical interventions; monitor for signs and symptoms of cervical myopathy; repeat cervical spine radiography as needed for sports/Special Olympics participation.

In particular, it is important to discuss issues related to the transition to adulthood:

  • Emphasize the importance of a well-balanced diet and routine exercise

  • Review plans for school placement and plans after high-school graduation and future vocational plans

  • Discuss plans for alternative long-term living arrangements (eg, community living); parents should update estate planning and custody arrangements

  • Encourage social and recreational programs with friends

  • Address concerns regarding menstrual hygiene, sexual abuse, pregnancy, and premenstrual syndrome

  • Discuss sexuality and socialization, as well as the need for supervision and degree of supervision required; review options for contraception if the teen is sexually active, as well as for prevention of sexually transmitted diseases; make recommendations for routine gynecologic care

  • Monitor the family’s need for supportive care or counseling, respite care, and behavior management techniques; facilitate referrals for respite care and treatment of parental problems

  • Facilitate the patient’s transfer to adult health care

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