A number of different physical and emotional factors weigh into the decision to stop growth hormone therapy.
Physically, the doctors must determine when the potential for growth has been reached. At a certain point in time, during adolescence for most children, the growing ends of the bones, called the growth plates, fuse together and little additional growth can be achieved. Pediatric endocrinologists use a number of factors to determine when this point has been reached. By tracking a patient’s growth with each visit, they can measure growth velocity, which will plateau as a girl begins to reach her growth potential. Doctors also use bone age to predict potential growth. Bone age is determined by taking an x-ray of the girl’s hand and measuring it against a standard for other children her age.
Emotional factors also are considered when determining a stopping point for growth hormone therapy. Estrogens, which are taken to advance puberty, slow down growth and accelerate the process by which the growth plates fuse. Once estrogen is introduced, growth will decrease. If a young teenage girl wants to begin puberty that desire might be more important than her wish to continue to grow. Or, she may just be tired of the daily injection regimen and want to “get on with her life.”
Ending growth hormone therapy is a personal decision, one that requires much discussion and reflection from the young TS woman, her parents, and her doctors.
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Currently we offer scholarships for membership, conference and children and teen camps. Contact the national office for scholarship applications.
- Membership scholarships allow a member to receive a $45.00 annual membership at no charge.
- Conference scholarships are quite popular and are awarded to 3-5 adult women or parent applicants. Registration fee for the conference is waived and some additional funding may be available.
- A camp scholarship is available for girls 10-19 years of age that attend a camp that TSSUS approves as a benefit to a girl with TS. Please access the support resource section of the website for additional resources for funding of teen camps.
- Unfortunately at this time the national office does not offer a college scholarship. If you are active in a local chapter, ask the leader if the local chapter offers a scholarship program.
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The treatment of TS individuals should be individualized; physicians, family and patients should decide on treatment options together.
Growth hormone therapy
Human growth hormone (hGH) is an FDA-approved drug used to increase the growth rate and achieve greater final height in TS patients. Therapy should be considered when a TS individual experiences growth failure and/or drops below the 5th percentile of the normal female growth curve. The expected increase in height depends upon many factors, including how early GH is started, what dose is given, the duration of treatment, if anabolic steroids (such as oxandrolone) are also given, and how late estrogen therapy is begun. Gains in height between 5 and 16 cm (2 and 6 inches) have recently been reported; however, not every individual responds to growth hormone. Treatment is discontinued when growth is very slow (less than 2 cm or 1 inch per year) or if the patient has reached a satisfactory height.
Estrogen therapy
This therapy is necessary in most TS individuals because of ovarian failure. Therapy is typically begun at 12-14 years of age but should be individualized to optimize both growth and pubertal development. Estrogen is given in small doses to initiate puberty and breast development. The dose is then increased and progesterone is added in order to initiate a monthly menstrual cycle. TS individuals can experience normal sexual function on estrogen therapy. Because of the role estrogen plays in maintaining healthy bone mass, it is generally recommended that the therapy continue untilthe age of normal menopause around 50.
Becoming a family
Many options are available to TS women who wish to have children. The most common fertility solution for TS women is adoption. There are now also assisted reproduction technology options for TS women who wish to become pregnant. They include in-vitro fertilization with egg donation by a related or anonymous donor or donor embryo transfer. It is critical that a TS patient undergo a thorough physical evaluation (particularly cardiac and renal) before attempting pregnancy.
With the help of medical specialists and a good social support system, a woman with Turner syndrome can live a happy, healthy life. |
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Diagnosis is made through a test called a karyotype, which is usually performed on cells in the amniotic fluid before birth and on cells in the blood after birth.
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