Pediatric Care Guidelines for Turner Syndrome

pediatric care guidelines

In this post, we will share care guidelines for pediatric patients with Turner syndrome (TS). We aim to provide a general breakdown of suggested physician visits and tests to expect to ensure early monitoring and prevention of potential health concerns.

Note: The information in this post is educational and should not replace medical advice from your physician(s). Always consult with a medical professional regarding any health concerns. These represent guidelines and thus may vary from person to person depending on your unique circumstances.

Care Guidelines: Children

The below list consists of suggested screenings to get on an annual basis for children with TS.

  1. Growth evaluation
  2. Physical exam (including height, weight, blood pressure, heart, lymphedema)
  3. Hip dislocation screening (in infancy)
  4. Ear infections
  5. Hearing screening
  6. Scoliosis (general orthopedic evaluation)
  7. Vision screening (starting at age 2)
  8. Thyroid and liver function tests
  9. Psychosocial evaluation for development, behavior, and school performance
  10. Pediatric dental specialist (by age 2)
  11. Orthodontic evaluation (no later than age 7)
  12. Dermatology (special focus on moles)
  13. Cardiac MRI (at age 9)
  14. Endocrine evaluation for pubertal delay
  15. Nutritional evaluation (including celiac screening and education)

Care Guidelines: Adolescence

Adolescent individuals with TS should follow the same guidelines as above (for children) as well as some of these additional considerations.

  1. Counseling for sexual issues
  2. Pediatric endocrinology care transferred to a family practitioner or adult/reproductive endocrinologist
  3. General transfer of care from pediatric clinicians to adult clinicians (e.g., cardiologist, audiologist, otolaryngologist, gynecologist, psychologist)

Pediatric to Adult Transition of Care

The transition of care from pediatricians to adult physicians is an important step in individuals with TS. Below are some guidelines on how to manage this transition.

  1. Transition of care should occur by the completion of puberty (~18 years of age)
  2. Transition of care is a process, it should take place over 2-3 years during the late pubertal period
  3. Estrogen replacement therapy (ERT) will have or should have started (ERT treatment will continue until the average age of menopause, between 45-55 years of age)
  4. Pediatric care should be transferred to and managed by a family practitioner (they will also help manage specialist relationships)

Additionally, here are some preventive measures that can be taken to stay healthy during this transition:

  1. Maintain a healthy and active lifestyle
  2. Carefully monitor blood pressure and treat hypertension if it develops
  3. Continue to take estrogen into adulthood

For additional resources on transitioning care, tracking tests and appointments, and more, please visit the Patient Handbook on TS here.

Written by Reyn Kenyon, TSF volunteer blog post writer and editor, and edited by Susan Herman, TSF volunteer blog post editor and translator.

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