Puberty and beyond

At around 9 or 10 years old, it may be beneficial for your son to start seeing an endocrinologist

to check his progress as he undergoes puberty. A baseline understanding of his genetic condition will be useful for him to understand why he has these appointments.

A healthcare professional such as a genetic counsellor can help if you are unsure about how to approach these conversations.

 

Although puberty is very variable for all people, if there are delays or problems with progression, a doctor may prescribe testosterone as a supplement to help your son’s growth throughout puberty.

It is also useful to be aware that boys with KS can be more prone to tooth decay. This can be prevented through typical recommendations such as brushing teeth day and night and limiting sugar intake.

At puberty, the production of male sex hormone called testosterone is increased. Testosterone is important for healthy bone and muscle to grow and develop in boys.

Although many boys with KS have normal development at puberty, some can experience delayed puberty. They may have weaker muscle growth or slowed development, reduced facial and body hair with possible late onset of this, a smaller penis and testicles, and/or increased breast tissue (gynaecomastia).

They can also have wider hips, or grow taller than expected with longer arms and legs.

Having an awareness of these differences can be useful and may help to create a safe space for your son to discuss his experience with you. 

Some boys with KS can be shy and have lower confidence that can stem from difficulties with expressing themselves and socialising in groups. Social skill groups could be useful to develop this confidence and encourage involvement in team activities. A formal assessment of his needs may be important and an individualised education plan can be created with assistance from school staff and other services. Encourage him to take part in activities he enjoys and let him know you are there for him when he needs you.