Tips for Dealing With Puberty in Angelman Syndrome

If your child has Angelman syndrome and is going through puberty, it’s best to consider all aspects of emotional development and male and female sexual health so that you can best support your son or daughter during this time.

Here are some tips that may help you to do just that.

What is puberty?

Puberty is the time in life when a boy or girl becomes sexually mature. The process typically occurs between ages 10 and 14 for girls, and usually a little later, or between ages 12 and 16 for boys. It causes physical changes and affects girls and boys differently.

The first sign of puberty in girls is usually breast development and then hair growth in the armpits and pubic area. Menstruation usually begins last.

In boys, puberty usually starts with the testicles and penis getting bigger. Next, hair grows in the pubic area and armpits. As puberty continues, muscles grow, the voice deepens, and facial hair develops.

Both boys and girls typically get acne, and puberty brings them closer to their adult height.

The hormones that control puberty affect a person’s feelings as well as his or her body. Thus, during puberty, emotions may become stronger and more intense. Mood swings also are common.

Puberty in Angelman syndrome

According to some researchers, puberty onset usually occurs at around the same time in Angelman syndrome patients as it does in adolescents without the syndrome.

Other researchers, though, indicate that puberty may start one to three years later than usual in teens with Angelman, but that sexual maturation occurs normally.

There’s also a case of a 9-year-old girl with probable Angelman syndrome who presented with signs of early puberty, including breast development that had started around age 6. Further, research has shown that Angelman can cause abnormal sexual development.

Puberty also can also worsen anxiety, which can lead to difficult behavior.

Tips for parents

Here are some ways to help you manage your child as he or she navigates through puberty.

Menstruation management

It’s recommended that parents allow girls to progress normally through puberty before considering any medications to suppress or lighten their daughters’ menstrual periods. Parents will have the option of considering oral contraceptives or other means of birth control. Note that such measures prevent pregnancy, which may influence your decision to treat your child. It’s best to speak with your child’s physician about this.

Procedures such as uterus removal or endometrial ablation — used to remove or destroy the lining of the uterus in girls who have heavy bleeding —  are considered drastic and are usually not recommended.

Sexual health and activity

Masturbation is a normal activity for adolescents and you should not try to prevent it. However, you should encourage your teen to engage in such activity in a private space.

Adults with Angelman syndrome have formed relationships with those of a different gender. You may want to consider contraception if your child is in such a relationship.

Hygiene

As your child moves through puberty, explain and model good hygiene, and create a hygiene kit with everything your child needs to take care of his or her body. This could include deodorant, soaps, and possibly acne medications, as well as sanitary pads for girls.

Talk with your child

Children with intellectual and developmental disabilities usually have trouble picking up on social cues. Talk with your child about appropriate behaviors and privacy. Be sure your conversations about sexuality are respectful and free of judgment.

Safety and sexuality

Teens with disabilities and special care needs are less likely to receive proper information about sexuality. They also may be more likely to be victims of sexual assault.

Help your child know to say “no” to inappropriate touching, and keep a close eye on their mood and body. Encourage your child to report to you or a trusted adult any instances of inappropriate touching. Remember that antisocial behavior, regression in behavior, or unexplained bruising or pain could be signs of abuse.

Last updated: Jan. 18, 2020

***

Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.