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QUESTIONS PARENTS ASK 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.
QUESTIONS GIRLS ASK Q: What is wrong with me because I have Turners? A: You are a girl who happens to be missing a small piece of genetic material which, because it is lacking, does not give you average height and functioning ovaries. Female hormone pills, containing progesterone and estrogen, taken orally, will replace what your ovaries would have produced. Ovaries cannot be created, however, so you will remain infertile. Q: What is the life expectancy for a girl with Turner's A: There is not really enough information to say for certain, but it appears that some girls with Turner's may have a slightly shorter life span than average. This could however, be due to some of the medical problems associated with the disorder, and not a necessarily as a result of the disorder itself. With proper supervision by a doctor, there is no reason that a girl with Turner's can't have a long, full life. Q: How long will it take for my periods to start and my body to change after I start taking my estrogen medication? A: Menstrual periods should start anywhere from one to six months after starting estrogen therapy. You should be aware of changes within six months to a year. Each girl develops and changes on her own time schedule. Q: Will I always need to take Female Hormone Pills? A: Yes. Taking these pills will become a habit that will become second nature to you. You should take the pills at the same time every day. Your doctor should continue to see you on a regular basis to make sure you are always on the right dosage. Q: What are the conditions that allow some girls with Turner's to concieve and others not? A: A very few girls have a mosaic condition with some normal cells, and may have functioning ovaries. This is unusual, however, and should not be counted upon with certainty. Q: Who makes the decision as to whether or not I should have hormone medication to make me grow? A: Your doctor, your parents, and you should all discuss and decide if you should take male hormone derivatives, and if so, how long. Q: What criteria is used for the decision to start and stop taking the growth hormones? A: If your doctor recommends the male hormone, you will probably start on hormones two or three years before you reach adolescence and before your body stops growing. The criteria for reaching the decision to stop taking them is what will be more important for you - immediate sexual development or the chance for another centimeter of growth. If you start the growth hormones at an early age, you should probably be ready to start estrogen/progesterone therapy when you reach adolescence. Q: Will I always be short? A: You will always be shorter that average. However, with successful growth hormone treatment, your height may be slightly increased. Q: Will I always have a thick neck, or a small jaw, and will these features get worse. A: They will not go away by themselves, but neither will they get worse. A plastic surgeon and an orthodontist can do a lot to alter these areas if they are of real concern to you. Q: Will I ever act as grown up as my friends? A: Yes. By the time you are a young adult, you will feel and appear to be much like them. Q: Whose fault is it that I was born with only one X? A: There is no "fault" involved. There is nothing either parent could have done at the time of conception to have prevented the omission. The error could have occurred during the formation of either the sperm or the egg. |
