47 XXY syndrome

47 XXY Syndrome Awareness

To my surprise, I found out I was pregnant at 45. My husband & I already had 3 children. At the time my youngest was our 13-year-old son who does not have 47 XXY syndrome.  Because of my age, I had to have an amniocentesis. I was elated when the results came back Down Syndrome free. But what was this 47 XXY syndrome they wrote about? The results included a thin, little book explaining what it was in diagrams & in medical terminology. I had never even heard of 47 XXY syndrome, so I didn’t give it much thought. My husband & I kept it to ourselves & put it on the back burner. As time went by, I would go over the little book to try and get more understanding of 47 XXY syndrome. It spoke of learning disabilities, anger issues, & infertility. But it also mentioned that some 47 XXY syndrome boys do not experience any of those things.

I was praying that my son would be one of those 47 XXY syndrome boys, but that was not to be. At the age of 2, Marcus was still not talking. Deep down I knew something was wrong. We had him tested & found out he had a speech delay called Apraxia. He began speech therapy at 2 & it continued through 6th grade. He’s 13 now, turning 14 soon. He still has difficulty with his R’s & because of that, people think he has a Boston accent. Which he thinks is cool!  In 3rd grade we had him tested for various things, and found out he has ADHD, & learning disabilities. He struggles in reading & writing. Reading comprehension is hard as well. I must say though, he’s always been very bright in Math! At that time he began taking Adderall & he had an IEP put in place at school. The IEP will follow him all the way into college.

Over time he was able to raise his grades. He enjoyed school & had a lot of friends. From the time he was 6, he always played sports, including baseball, basketball & soccer. As a proud momma, I am his biggest fan. I have to say he is a STAR pitcher! While all that was going on, we noticed at home, his temper was on the rise. He can & still does go from 1 (being calm) to 10 (angry & yelling) in a heartbeat. It’s like he gets stuck in his negative emotions & doesn’t know how to process them. He’s very sensitive to criticism and doesn’t do well when plans for his day change unexpectedly. At times he can act very immature.

But as fast as he is to yell & say mean things, he is just as fast to say, “Sorry mom. I love you.” He says it every single time! And that in itself helps me get thru the tough times. We have learned tools in order to help him learn coping skills, but it’s not easy & requires a lot of patience. We have our good days as well as our bad days.

When he entered 7th grade he began to have anxiety,  to the point it hindered him from doing the things he loved to do. He played baseball that year, & at times it was difficult to watch. His heart just wasn’t in it. The last time he played basketball, he was on a travel team. He was living his dream. And now the thought of himself trying out for the 8th-grade basketball team gives him anxiety.  I’m a firm believer that if a kid isn’t having fun, then why make him play. So we don’t push the issue, and it breaks this momma’s heart.

My husband & I are most likely different from other parents. In that, we have chosen not to tell Marcus that he has 47 XXY syndrome because he tends to play the “feel sorry for me” card. We feel that he would use having 47 XXY syndrome to his advantage, and he wasn’t mature enough to handle it. But that may all change in the near future, though.

Marcus has seen an endocrinologist since he was about 8. Everything has always been normal until his last visit this December. His testosterone levels were slightly low, and he goes back in June. If they are still low, then we are looking at testosterone treatment. At that time, we will have to explain to Marcus what’s going on & why. I feel confident that my husband & I can speak to Marcus in a way that doesn’t leave him feeling weird about himself. That a lot of boys have 47 XXY syndrome & we will show him Ryan’s YouTube channel. Marcus is a very big YouTuber kid.

Right now he’s in a transition period. We took him off the Adderall because of the anxiety he feels. But he’s disruptive in his classes, not focusing on his school work, etc. So we have an appointment with his regular doctor to see what other alternatives are out there besides Adderall. I know screen time & foods also play an important part in all of this as well. Screen time itself can get hard because he loves Forte Nite & any kind of hot chips you can think of!

Even though times can get tough, it doesn’t mean they have to stay that way. There are good days ahead for my almost 14 not quite yet 6’ tall son! It’s great that there are so many resources out there now for parents who need help.

I want to thank you, Ryan, for putting yourself out there for the world to see 47 XXY syndrome. It’s been a long time coming. You are making a difference in so many lives! Take Care, Marcus ‘s Mom

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