Puberty signals the beginning of sexual maturity, as your child goes from being a child to becoming an adult. Most girls reach puberty before most boys. Puberty in girls typically begins between the ages of 10 and 14 but can vary greatly. Some girls start puberty as early as eight years old while others experience the start of puberty in their teens. On average, puberty in boys starts two years later than in girls.
Hormones (whether they are released naturally or come to your child through a doctor’s prescription) trigger many physical changes in adolescents. Typically adolescent girls going through puberty will experience an increase in height, change in body shape, development of breasts, growth of hair in the underarm and pubic region, development of the clitoris, and an increase in activity of oil and sweat glands. If a girl has ovaries, she will at some point generally start a menstrual cycle. Physical pubertal changes in boys typically include body hair growth, increased oil and sweat gland activity, enlargement of the genitals, deepening of the voice, and increased height, weight, and muscle mass. During puberty, both girls and boys experience an increase in sexual excitement, mentally and physically. They can become sexually aroused often and when they may not expect it.
Because of your child’s DSD, she or he may go through puberty differently than the average child. Your child may start puberty earlier or later than most, and may not have all the typical signs of puberty. Talk to your child’s doctors about what exactly to expect, and prepare your child for that by passing on the information to him or her. If your child has not started puberty when you think he or she should have, consult your child’s doctor. Pediatric endocrinologists are specialists in puberty.
If your child has functioning testes or ovaries, he or she may start to enter puberty naturally. If your child has had his or her gonads (ovaries, testes, ovotestes, streak gonads) removed before puberty, he or she will not start puberty until he or she takes hormones given by the doctor. With some DSDs, children may have gonads that will make their bodies change in ways that they don’t want. For example, a girl with 5-AR Deficiency Syndrome who has testes may have some “masculinization” (have some parts of her become more masculine-looking), which she may not want.
It is very important to work with your child and his or her doctors to manage the physical aspects of puberty in the way your child wants. It can be impossible to undo some of the effects of hormone treatments and natural puberty. Of course, your child will want to go through a puberty that works with his or her self identity. So, for example, a child with 5-AR Deficiency who thinks of herself as a girl will not want a puberty that causes her to develop like a boy; she may want to have her testes out before her puberty starts, and then take female hormones to go through puberty. Or a child who is a girl and has had her gonads taken out may not want to take so many female hormones that she grows very big breasts. She will want to have her hormones adjusted so that her body doesn’t end up with effects she did not want. In the event puberty is beginning before your child is sure of what she or he wants, special hormone treatments may be used to hold off puberty a little longer. Talk to a pediatric endocrinologist about this.
Puberty is an especially good time to rely on medical professionals to help you and your child. A mental health professional (like a child psychologist or a psychiatrist) can help your child figure out and express what he or she wants. It makes sense to work with a mental health professional and a pediatric endocrinologist to plan for puberty in a way that fits your child’s needs.
Telephone and face-to-face contact with other parents, written resource materials, and internet support groups can also help, especially during stressful or difficult times in your child’s development. Remember: it is common for parents of children with DSDs to go through times when they feel strong and sure, and times when they feel weak and unsure. Reach out when you need help, and tell people what you need.