Q: How old should our daughter be before we tell her of her condition and how much should we tell her at what age?A: She should be given a few facts at a time as soon as she is aware that she is under medical care. You should use the term Turner's in a matter-of-fact way. You may want to discuss her short stature, and/or related physical problems. Her reproductive system will be examined several times starting at an early age and she should know the reason for this when you feel she is ready. Remember, she might not ask any questions, but this doesn't mean she isn't full of questions. Unasked questions can lead to terrifying fantasies. It is better to know the truth than to imagine problems which might be far worse than the actual facts.
Q: Are there dangerous side effects of a lifetime commitment to estrogen?
A: At this point we cannot answer this question as too few patients with Turner's Syndrome have been treated for a long enough period of time. It is our opinion, however, that the estrogen / progesterone which is prescribed is only replacing that which the ovaries would otherwise make, so there should be no reason for increased side effects. As with all women, it is important that girls with Turner's Syndrome have a yearly check-up which inludes a pelvic exam and pap smear, and should report anything unusual to her doctor.
Q: Will there be behaviour and mood changes when our daughter starts estrogen medication?
A: Very possibly. She may develop cyclical mood swings just as most women do. The severity and regularity will vary, just as it does in the rest of the female population.
Q: What are the hormones that will increase her growth?
A: These hormones may be either estrogens or androgens. They are used to promote growth. Androgens in the male are responsible for a man's greater height and masculine characteristics. In the female they should produce only increased height and no masculine features.
Q: What are the side effects of these male hormone derivatives?
A: The two primary things to watch for are deepening of your daughters voice, and the possibility of some increased body hair.
Q: Will the side effects disappear after this treatment stops?
A: Her dosage should be monitored carefully before these side efects become a problem. The excess body hair should disappear when the androgens are stopped;however, her voice may remain deeper.
Q: What is premature aging? When does it start?
A: Premature aging means the early onset of old age, usually starting as early as adolescence and becoming obvious by the mid-twenties. Hormones can slow down the process however.
Q: How can we help our daughter to develop a healthy self image?
A: Parents who have a good sense of their own sexual indentity, who are positive in their attitudes toward their daughter, and who can become comfortable with the diagnosis of Turner's Sundrome usually produce girls with a healthy self image.
Q: How can we help our daughter become responsible for taking her estrogen?
A: Give her the responsibility from the very first and take for granted that she will remember. It should be taken at the same time every day and become a habit. She will undoubtedly feel the positive effects of the pills, making it easier to remember to take them.
Q: How can we help our daughter act her age?
A: Try to treat her according to her chronoligical age rather than the age she appears to be. Let her have as much responsibility as she can handle and try not to baby her. She may wish to be babied, which is natural, but beyond a certain degree, this may develop into a chronic behaviour problem.
Q: How can we help our daughter have more friends?
A: Make sure she has a chance to join groups, such as Church groups, Girl Scouts, etc. Encourage her to participate in school activities. Don't criticize her for choosing friends who may be younger than she is; if they are acceptable friends, welcome them into your home.
Q: Is there a relationship between lesbianism and female sex chromosome abnormalities?
A: No! In fact, girls with Turner's Syndrome have been found to have a good sense of female identity and are maternal and feminine.
Q: Is there a chance our daughter may be more promiscuous than girls who may easily conceive children?
A: No! There appears to be no correlation between infertility due to Turner's Syndrome and promiscuity. She may be more shy and slower to mature in her realtionships with boys than many of her friends, or sisters.
Q: Is it usually the ovum or sperm the has the missing X?
A: It can be either; there is approximately a 50% chance the missing X will come from the female, and a 50% chance that the missing X or Y will come from the male.
Q: What are the chances of our other children also having a sex chromosome abnormality?
A: The chance for giving birth to another girl with Turner's is low, less than 1 in 100. The chance for giving birth to a child with another sex chromosome abnormality, such as a girl with 47,XXX, or a boy with 47,XXY is negligible.
Q: How can we talk to other parents of girls with Turner's to discuss our mutual concerns?
A: Your local genetics clinic should have contact with many such families. Ask them about it and they may be willing to organize a group of parents and/or girls to meet together and talk.
Home
