FAQ’s – Parents and Caregivers

Below are some frequently asked questions that parents and/or caregivers may have. These questions and answers are meant to be used as general information to help you learn more about caring for someone with TS.

What types of doctors will my child be seeing?

A pediatric endocrinologist will diagnose, treat, and manage your child’s TS. Pediatric Endocrinologists will work in tandem with your child’s pediatrician to provide the best possible coordinated care.  Specialists will care for specific medical needs, such as a cardiologist. 

Are there standards of care for those with TS?

There are care guidelines set in place for individuals with TS. If you would like to read a summary of their recommendations or the entire paper, it can be found on our website under “Resources”or directly found here: https://turnersyndromefoundation.org/wp-content/uploads/2017/07/Clinical-Practice-Guideslines-International-G1-2017.full_.pdf.

 Will my child have a normal life with TS?

Girls with TS have average or above average intelligence. Early interventions create the best opportunity to live life to the fullest without restrictions.

What changes will have to be made to accommodate my child?

For some, a recent diagnosis of TS may cause drastic changes in how they go about their daily routine. Something as extreme as quitting a job isn’t always necessary, but it may be in certain cases. For others, they will learn to adapt to small changes that may have to be made to accommodate. Remember that coming to terms with a diagnosis is a process and you will not have everything figured out at once. Learning all this new information will take time and you will only move forward as time progresses. 

What would you say are potentially the biggest complications or hurdles for an infant or child diagnosed with TS? 
For the infant, heart and kidney malformations as well as ear infections are the most problematic.  As the child ages, hurdles change to school and social issues. Dental, hearing and pubertal development problems are challenging.  Frequent physician appointments are frightening and fear of the unknown at each new visit can cause tension. 

What are some tools that can help me share the diagnosis with the medical team? 

  • Karyotype
  • Clinical Guidelines
  • Physician records
  • Individual & family history 

Are parents  encouraged to address their daughter’s likely infertility at a young age? 
This depends on the culture in which they exist. In some cultures, this issue will be brought forth earlier than others. This is an issue that need not be addressed too young, but if it is addressed by the young girl, then truthful answers need to be provided. It is usually not helpful to bring up the subject early if it has not been problematic for the young girl since they do not need additional worries. 

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