1. Build a Relationship With Your Son's Doctor and Therapists
Establishing a relationship with your son's doctor can help you manage your child's disorder. This is particularly important if your son is being treated with testosterone during his puberty and teenage years. You'll need regular follow-up visits to check his progress and monitor the hormone therapy. Be sure to choose a doctor with experience treating Klinefelter's syndrome. A medical geneticist or endocrinologist is most likely to be experienced with this particular disorder. Regular checkups are also needed to screen for conditions that men with Klinefelter syndrome are at an increased risk of getting, such as autoimmune disorders, male breast cancer, osteoporosis and non-Hodgkin's lymphoma.
2. Get Educated and Educate Others
When your child is diagnosed with a genetic disorder, it can be very challenging to deal with the news. Most boys with Klinefelter syndrome, however, go on to lead relatively normal lives. It's important to educate yourself as much as possible about Klinefelter syndrome so that you know what symptoms to look out for and what type of therapy is most helpful. Likewise, you should educate other family members and teachers and administrators at your child's school. Your child may need additional assistance because of the behavioral and learning difficulties many boys with Klinefelter syndrome experience. Additionally, children with Klinefelter syndrome often have problems with social interaction, which can make them vulnerable to bullying from peers. It's helpful if all of those charged with educating and caring for your child know about Klinefelter syndrome so that your child is properly protected and encouraged both at school and at home.
3. Seek Treatment for Behavioral and Learning Difficulties
Behavioral and learning difficulties are common in boys with Klinefelter syndrome. This may be due to how this syndrome causes the brain to develop. These difficulties can often be managed through regular therapy. If your child has developmental problems such as difficulty learning to talk, speech therapy can be helpful. Learning challenges can be managed through special education in the school system or outside tutoring. A child psychologist may be needed to help with behavioral problems and problems with self-esteem that may arise in part from the physical characteristics of this disorder. Without ongoing emotional therapy, your child may be at risk for depression and other psychiatric conditions, as well as drug and alcohol abuse.
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