All About Tomas
Hello everyone. Welcome to my website! I have created this website because I felt like there was a lack of community for mothers with children that have Kinefelter or xxy syndrome. This website is anything but formal so feel free to comment back and ask me questions or just simply share your stories to get a sense of community; we are all in this together.
About sixteen years ago, I found out I was pregnant with a boy; I named him Tomas. He is now fifteen years old and my life pretty much revolves around him. Unfortunately, we found out that he had Klinefelter Syndrome early on. Through-out this website, I will be discussing not only the syndrome itself and why it occurs in males, but also how to cope with this syndrome as a mother. Please visit my other tabs for a discussion abut these topics.
Tomas' symptoms and physical appearance is very typical for boys with Klinefelter Syndrome. After the age of five was when we first noticed differences between Tomas and the average boy his age. He was taller, clumsier and had a fatter belly. Also he was slower in developing motor skills and things such as speed, coordination and muscle strength. As a child Tomas combatted some hardships during elementary school and still has some of these problems in high school:
- A delay in learning to talk. Infants with KS tend to make only a few different vocal sounds. As they grow older, they may have difficulty saying words clearly. It might be hard for them to distinguish differences between similar sounds.
- Trouble using language to express his thoughts and needs. Boys with KS might have problems putting their thoughts, ideas, and emotions into words. Some may find it hard to learn and remember some words, such as the names of common objects.
- Trouble processing what he hears. Although most boys with KS can understand what is being said to them, they might take longer to process multiple or complex sentences. In some cases, they might fidget or "tune out" because they take longer to process the information. It might also be difficult for KS males to concentrate in noisy settings. They might also be less able to understand a speaker's feelings from just speech alone.
- Reading difficulties. Many boys with KS have difficulty understanding what they read (called poor reading comprehension). They might also read more slowly than other boys.
As he started approaching puberty and at the very start of it, everything seemed fine. Now that he is going through puberty, other physical things have come to my attention which I have researched confirming that it has to do with Klinefelter. Because his body makes much less testosterone, his development has been slow.
In addition to being tall he has:
- Smaller testes and penis
- Breast growth (about one-third of teens with KS have breast growth)
- Less facial and body hair
- Reduced muscle tone
- Narrower shoulders and wider hips
- Weaker bones, greater risk for bone fractures
- Decreased sexual interest
- Lower energy
- Reduced sperm production
Other than the physical features that Tomas has, he does not have any severe social and behavioural symptoms but is still affected.
Many of the social and behavioral symptoms in KS may result from the language and learning difficulties. For instance, boys with KS who have language difficulties might hold back socially and could use help building social relationships. These symptoms are:
- Quieter
- Less assertive or self-confident
- More anxious or restless
- Less physically active
- More helpful and eager to please
- More obedient or more ready to follow directions
Tomas really is the sweetest kid. I wouldn't change anything about him even if I had the chance. It really could be much worse! There are different types of this "xxy" syndrome that occur in boys that are much more severe! These syndromes are XXYY, XXXY or tetrasomy, XXXXY or pentasomy. They have similar symptoms but with more severity. For example, males with pentasomy have a very low IQ, paired with other physical symptoms such as up-ward slanted eyes, heart defects and so on. At the end of the day, you just have to be grateful for the things you love about your child in order to overcome some of the anxiety or worry set on by thinking about a "less than perfect" child.