FAQ’s – Treatment

Below are frequently asked questions that you may have about treatment for TS. These questions and answers are meant to be used as general information to help you learn more. For more information about specific questions you may have, consult with a health professional.  

Growth

When should my child start Growth Hormone (GH) treatment?

GH treatment is most effective when initiated early in age. According to the clinical care guidelines, starting GH around 4–6 years of age is more likely to result in greater height gains during childhood. It also allows for age-appropriate induction of feminization, in hopes that both optimal adult stature and timing of puberty can be achieved.

Will GH treatment be covered by insurance?

GH treatment is very expensive. Since GH is considered medically necessary though, a lot of insurance companies do cover the treatment. If it is not covered by your insurance, appeal from your physician is an option and other assistance is available as well.

How long would my child by on GH treatment for?

A child usually receives GH treatment until growth velocity has decreased to 2 cm (~.79 inches) over the previous year with a bone age of at least 13-14 years. Bone age is not always equivalent to actual age, so it possible they could be taking GH past 14 years of age.

Feminization/Reproductive Health

How long will my daughter be on estrogen therapy for?

Typically, estrogen therapy lasts until menopause and then she would be slowly weaned off the therapy.

Is there an increased risk for breast cancer while on Hormone Replacement Therapy (HRT)?

There is no evidence that shows an increased risk to breast cancer while receiving HRT.

Beyond initial development, what are other benefits to being on this therapy?

HRT provides many cognitive benefits such as improved motor speed and performance. It also helps to improve maturation, and better bone health (osteoporosis is a very large issue that many with TS face). HRT also helps to maintain uterine health and keep it vital, as well as improve overall sexual life.

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