Adolescence & Beyond
Adolescence and puberty are not affected by Rett syndrome. Signs of puberty can appear prematurely, as early as 7 or 8, but true puberty generally occurs around the same time as her typical peers. Visit MedlinePlus for general information about puberty. Below are some resources for individuals with Rett syndrome.
Jane Lane, RN, BSN, University of Alabama Birmingham, Rett Center
Puberty: Questions and Practical Answers
Menstrual flow is odorless until it comes in contact with air and bacteria. Bathing and the use of disposable wipes are helpful. Sanitary napkins can be used in the panties or can be inserted in the diaper for extra protection.
Vaginal irritation is common in girls over 3 years for a number of reasons. Inadequate bathing, wiping from back to front or washing too vigorously may cause problems. Pinworms and anal scratching are other sources of vaginal irritation. To avoid these problems, change her diaper frequently, give warm baths (avoid using bubble baths) and use bland lotions or ointments to protect the skin.
Slim tampons which have been developed for teens can be used, and are most easily inserted when she is lying on her side, legs drawn up. Be sure to insert the tampon completely into the vagina, as it will be uncomfortable if it is only partially inserted. If tampons are used, it is important to change them often.
If your daughter has a period, she may experience some signs of PMS taking place. These changes are predictable and short-lived. Seizures can worsen prior to the onset of periods.
The birth control pill will reduce her menstrual flow. Other methods to eliminate her period altogether include shots of Depo-Provera and surgeries known as endomtrial ablation and hysterectomy.
Newer low dose oral contraceptives are more effective and have fewer risks. There are dozens of brands on the market today. Your daughter’s physician should be consulted about the risks and benefits and the type of pill that is best for her. Weight gain may occur, but in Rett syndrome, that is usually a plus!
Parents often worry about the problems created by sexual maturity. Most are uncomfortable with masturbation. This kind of stimulation is not abnormal. It is satisfying and a natural part of sexual maturity. It can be embarrassing when it happens at inappropriate times, but it will not hurt your daughter. Learning to control the behavior in public places can usually be accomplished through behavior modification techniques.
Most parents share this fear as we look down the road to when our daughters are no longer in home care. As difficult as it is to confront, protecting her against potential abuse is very important. Keep her away from risky situations, watch for the danger signs of molestation then will be seen in her behavior, and trust your instincts.
Judy O Barrish, BSN, RN Patient Manager/Project Coordinator, The Blue Bird Circle Rett Center
Day Habilitation Programs and Alternatives
In most cases, public schools continue until at least 21. The options available for adult programs will depend on where you live. Contact your state Development Disabilities Agency for identifying appropriate programs. Also look into potential jobs or volunteer opportunities in the community.
Planning for the Future
Individuals with Rett syndrome can and do live well into adulthood. It is important to plan for the future and get the support and equipment you need to help them live to their greatest potential. In the U.S. you can contact The Arc for a local referral to professionals who can help with adults. You can also reach out in one of our local support networks for advice and wisdom.
To protect your adult children, learn more. Watch our RettEd Webinar by Mary Anne Ehlert, CFP. Protected Tomorrows, Inc
To learn in depth about Guardianship, download this PDF.