What does it feel like to have Klinefelters' syndrome?

Hello Donna, 

I don't often get messages from parents of the boys.  The only thing we have in common, that's your son and I, is the chromosome count. The genes I have and the genes he has are completely different. We are all individuals.  I suppose there will be some things that we shared at your sons stage of life, but I have no idea what they might be, as well obviously, that was a long time ago for me, and  he won't remember now any better than I did at the same stage, when he's older.  

Both my parents are dead now and I can't ask them anything.  I don't know what type of baby I was. All I can do is read the research, like you, and see what seems similar.  Yes I think the doctors are 'winging it.'  I don't think they like to admit it.  With people who have  Downs, for instance,   they're very obviously different, as such they're very easily found, and their difficulties are very well documented. Their type of additional genetic material event has specific features that doctors hope, I'm sure, can be made  about others with any type of additional genetic material event.  It just doesn't seem to be working out that way. In XXY's there is wide variation of effect, you can read just how wide in conversations here.     

From what you say you seem to be doing perfectly OK.  I have no doubt your son will speak eventually, maybe he's just getting around to it?    I don't know of any instances where XXY boys never spoke, biut I have read of research that indicates later to speak scenarios.  I don't know when I started speaking, but I do know I wasn't very communicative as a child.  Maybe that was because I was XXY, maybe it was another reason?  I know some of my counsins' children had speech problems, and speech therapy wasn't invented just for XXY boys, it's not an uncommon feature of children. So, even as your son is later to talk, it may not be because he's XXY?      

Thanks for writing to me.

 

 

Hi Donna,  my son is also XXY - he'll be 4 in June. He was late to speak, but by the time we got some speech therapy he'd caught up. He's very good at recognising letters, and knows the alphabet. He doesn't have as much strength or co-ordination in his legs as most boys, but he is very bright, happy, and has really good fine motor control. He certainly doesn't seem to be affected apart from his gross motor skills in his legs. We found out about 6 months ago, due to his balance/co-ordination and delay in speech. He doesn't like busy places, as we think he worries about being pushed over. He was also a bit late sitting, crawling and walking. 

Thank you so much for writing! You are the first with a little one to respond. Owen sounds exactly like your boy. He is just 2 years old now and still not close to talking. He has been in therapy since he was 3 months old. I am hoping he will catch up as well in the next year or so, but he communicates so well in other ways. How has your little guy been with food? Owen acts like he is afraid of the food and getting him to eat anything at all is very difficult. He is on so many supplements because of this and has been my biggest worry of all. Have you been potty training at all? We haven't tried and don't expect to anyone soon. Overall, he is the greatest joy ever! He has such a big heart and is such a good and happy boy!

I just signed up to participate in this site -- specifically in hopes of finding more moms who are trying to navigate xxy with their sons!

My son is 2yrs old. Youngest of 5 kids... And as bright as the sun in our family! My little one can communicate very well, but he doesn't actually speak much yet. We're working on it.

Is there a thread of other moms that you've found? Maybe you and I and sandy1941 could start one and stay connected?

Your situation seems very similar to mine. Our little guy is very bright and very engaged. He communicates very well although he doesn't say too many words. He is absolutely gorgeous as well, inside and out.

We, as well, have not told many people for the very same reasons you have not. I often forget that he is xxy, but I never forget how very special he is.

Finding out was the hardest part for me. I cried for two days and after I came to terms with the genetic diagnosis I have never looked back.

I have searched the Internet many times hoping to find some support from other mothers, as such an early diagnosis is relatively new, but I haven't found exactly what I am looking for. I would love for us to keep in contact!

I would love to keep in contact, too!

My little boy is 4 in 2 month, he didn't talk till just b4 his third birthday. He never stops now I don't always understand him but most of the time I do.

I also believe doctors don't know enough about xxy to inform us x

What is it you want to know?

I see it that there is a ton of information available for XXY patients and their families out there in internet land.  Maybe parents need more crystal ball type information, but as they’re crystal balls the information isn't going to be very accurate.  Who can reliably predict the future when a child is diagnosed prenatally, those parents have an advantage most parents never have.  

Like in quantum physics there's a test to see which way particles will move, and when they're not being observed they move in one way, but the mere act of observing causes them somehow to move differently. The mere fact you know about your XXY son may automatically change his potential, change the influences in his life.  What has affected those not diagnosed until later may never affect your son, simply because you know about him?

 

How can any doctor inform any parent in the way the parent can appreciate on any aspect of XXY, unless the parent says what it is they want to know about?   Were you planning on telling your son about sex? My mother had a plan about that, but she never actually did it with me. She may have done it with my brother, and did do something with my sister.  Girls tend to have menstrual cycles and tend to need to know that information.  I know parents often don't tell their sons about sex, they just let them find out by accident. My mothers' plan was that she would wait until I raised the topic, but I never did, so she never said anything.  That wasn't a very good plan.

So if you are planning on telling your son about sex, that will be the time to introduce the idea that he probably won't be able to make babies himself.  But you could say "we can take you to a doctor when you're a bit older and see if you do make sperm?"  If your son has learning difficulties you can take him to a specialist in the field he has problems in and get him assistance, but that's just easy to talk to him about compared to his sexual and reproductive ability, isn't it.

XXY males are supposed to have ‘small firm testes’ but I will predict your XXY son  has small testes simply because he’s so young, and you’d never know if they were firm, or not, as you’re not likely to squeeze them!  And even if you did, you’d not know if what you could feel was firm or not as you’d have nothing to compare what you felt to anything else.  But you can find reports of prepubertal XXY boys testosterone production and see that it is in the normal range for XY males the same age.  Then you can reliably expect your XXY sons’ testes to not be firm, as they’re functioning.   This is information the doctors do have…. but does your doctor have that information?   Can you really expect your regular GP to know everything there is to know about XXY prepubertal boys?  If your son has learning difficulties can you really expect his regular teacher at school to know about his specific learning problem? I think specialists ought to know about the finer details, not regular GP’s and Teachers.

If there is some detail that affects your son, you need to feel confident that you can ask the specific question that relates to that problem, of the specialists concerned.

I love this response. All of it. Thank you xxx

my parents said that i was made male as i peed through penis so doctor sewed up my pussy. at age 10 they operated again and made a bag for my testicles which they pulled down from half way between my bellybutton. this wa the most painfull procedure that i have ever been through.  even then i still looked as if i had female organ under my testicles and bag. i have total female hair pattern in croutch and at age 13 when my breasts started to grow was given testosterone injections to make me more male . even now at age 62 i could fill B cup. personally i think the main thing to do with your son is to make sure he is confortable with his  body as my father did for me . as the eldest of 4 kids we were always in bath or shower together boys and girls and from that even though my brother used to tell me i was different to him i just accepted the fact to be age difference. now i use my crazy body pattern to advantage and work as stripper for females in europe whenever i get there. the looks on the faces of women has been big confidence boost . i never really lacked confidence and flew through school with top grades to such extent that school was boring for me as i needed more stimulating mind work. i am willing to talk to anyone on the subject and volunteer as guinea pig for trainee doctors so they can see and ask questions . i have done this not only here at home in australia but oseas where they know more about our problem.

None of that sounds like KS to me, are you sure you're commenting on the right topic?

 

Thank you for sharing your story. It's very inspiring to know that you were an airline pilot. It's also inspiring because I am close to your age and somewhat share the same problems you had when you were a child in regards to school. It allows me to understand that there are other people like me and I don't feel like I'm out there all alone. 

I relate to you about having a child and when people make comments about who does your son look like more, his mother or his father. I always joke around with people in replying back to them saying that he looks like his mom but if his height and penile size are as tall and big as mine then I'll be happy but deep inside I always think about the same issues you talked about. My wife is also very sensitive to the issue when someone just a few days ago made a comment that if your child is a combination of the two of you then he'll be very attractive making my wife think that I have spread the news about my condition or I should say our situation.

Unfortunately my financial situation is not as such that I can stay home with my baby but I wish it were. I used to wish when I were much younger that if my wife makes more money than me and she's willing I would prefer to be a stay home dad instantaneously; that hasn't happened yet.

I was diagnosed with sterility and XXY about two years ago. I went through many treatments and a surgery to get sperms out of me but to the doctor's surprise it didn't work; he showed that he was very hopeful! I know for a fact that I were fertile when I was in college as I had visited a sperm bank and had volunteered to be a donor.

i took multiple regiments and brands of testosterone in the past year and none of them seem to work for me so I made an executive decision to deal with the low testosterone level of 18 and sustain the side effects of what has been published to cause osteoporosis for XY people when their levels are low. As far as energy level I was promised by using testosterone I would have a booster in energy level but that was not true for me as I were more tired when I were using testosterone.

if you need to talk or if I could be of assistance, please do not hesitate to find me here.