Where to start other than my only son is 21months old and my world he got diagnosed with klinefelters when in his mother's womb then confirmed at birth when docters tested his blood from placenta anyway me and his mother are no longer together she no longer speaks it that bad when I tried to talk to her about sons situation she said she would ring the police anyway my concern is my sons speech he only has 5words sorry make that 7 as I taught him to say sky and plane earlier today but did any one have problems when really young and with there speech my sons health visitor says she will check him when he 24months old but that 3month away and I know his age now is important for his speech development and I have actually spoken to a speech and language therapist who has sent me a referral form and said to send it back ASAP as son should be saying more words my son still calls me mam 10month after saying mam as his 1st word it seems as if he never going to call me DAD. People say he a late learner I hope he is but deep down I know it klinefelters. I am one desperate dad trying to get as much info as possible for my boy. Sorry for the long story
Hi if u go on google and enter Kline felters a load of stuff about it will come up and there some groups u can join to hope this helps
Thank you. Yes I have done as much as possible spoke to people but it people like my sons Docter and health visitor when I have tried to explain they just fob me off and say we will check yr son when he 24 months old which is no good as that will be 3months wasted
Today I finding it extremely difficult to find a speech therapist for my son I have filled a referral form & sent it off to the NHS it will take 3 to 4 month to get appointment but it now he should be seen it getting to the point my son is having temper tantrums as he can't say whatever word he wants to say he has 5 words I hope it just he a late learner but after speaking to parents of klinefelters boys & reading how it effects boys in early speech & language well I hope I'm wrong
My 3yr old son was diagnosed XXY in utero as well. He has been in therapy since he was 3 months old and now is in Special Needs preschool and still isn't talking although he understands everything I say. He doesn't say daddy either but can say mama. M's are a bit easier to sound out. I think it's just a delay as he has been delayed with most everything. By looking at him you would never know. He is gorgeous, smart (recognizes all his letters, colors and numbers), he is funny and cheeky, and is so easy to take out in public to stores and restaurants. He has some sensory issues with food, a lot actually. That is our biggest struggle. He is definitely a pleaser and is very sensitive and loving. I will be happy to discuss any questions you might have as finding parents of small children with KS is very rare at the moment, but I am sure more will develope in time when genetic testing becomes more frequent. I don't believe it's the end of the world and as long as you stay on top of things with therapy and lots of love and support and patience, then the advancement in Science and knowlege of KS are to our and our child's benifit. Please don't let your ex negate this diagnosis. Intervention is so important. Hope this helps.
Look into a birth to three program that you can be referred to by your pediatrition. Look up some signs on the internet and start teaching your son. Do your best to show him your full attention and you will soon learn his cues as to his needs and wants. My boy can't talk (yet), but he has learned to communicate so well. He can still throw a pretty good tantrum when he doesn't get what he wants or play has to stop, but it's not all the time. As long as you boy isn't tantruming multiple times a day, it is still pretty normal of a toddler to tantrum even without KS.
This is coming from the US. Not sure where you are from.
Thank you Donna we are in the UK but klinefelters is the same no matter where in the world we are .My boy is advanced at everything he understands what I say but it is his speech which is behind .Just want someone to assess him now and not have to wait till he 24months old
Yes, I am very aware KS is everywhere, but demographics is important due to the programs available. My son started therapy at 3 months of age due to his diagnosis and lack of using his left hand. He uses both hands now just fine, but continued to be delayed in rolling over, walking, and of course, speech. The U.K. has been doing the mother's free cell DNA testing two years longer than the US and the abortion rate is very high with this diagnosis. I didn't see that as being an option and am hoping to advocate against termination. Without my son, he is the youngest of three, I would not have such sunshine in my life, and those around him would truly be missing out. Your little one should be receiving services within his preschool, but having an evaluation with the disability services in your area, would open up more avenues outside of your pediatrician. This is where demographics is concerned, because I am not familiar with the services that are provided in the U.K., only the US.
I'm struggling to get anyone to even check my son out at the moment his health visitor says wait till he 24month old so this could be 3months wasted whilst waiting which I'm not happy about
Hello,, I am 53, now,,,, I was diagnosed when trying to conceive at 30,, and it wasnt working .. Long story short,, my fault,, DX with 47 xxy mosaic ..
Yes,, he will be a slow learner, and be anti-socail,, weak,, and possibly have
AHDH,, ?? a learning disability .... Get on Facebook and search Klienfelters Syndrome,,,,,, there are several support groups that can help,,, so much ... Good Luck,, with your son ..
Facebook has several support groups,,,,, search Klienfelters Syndrome
47 xxy,,, good luck ..
My son was just diagnosed via amnio. My husband and I are trying to read as much as we can. How did you find your pediatrician? We want to find a doctor who will work closely with us and the little guy when he's here, any advice on how you identified the right doctor would be great.
Most doctors don't understand Klinefelters Syndrome so they don't know how to handle when it happens to young children. There are current books on the subject, but I think if you write to the clinic in Aurora Colorado in the US, the Children's Hospital, they have a clinic for xxy children.
Or contact
They have resources that can help you find help for your child.
Every xxy individual is unique, not every child has adhd, or tantrums.
In my case as a child, I was a very calm person.Very shy and didn't really talk until I was 6 years old. But something happened to me when I was younger as my relatives have told me. I said I was a sissy , they laughed and it was the last time I talked until age 6. Some xxy have anger issues, some do not. Most are intelligent. Some have college degrees. Yes, speech therapists are needed with some children. Language can be a problem.
I hope you can get better informed about xxy. The internet has tons of information
Good luck in your quest.
More and more xxy clinics in the US are being started. Hopefully the UK will get one in the future.
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I recently went to a chromosome convention in Aurora Colorado in the US. and I picked up a small pamphlet called For EXtra. Special BoYs., a Guide to 47, xxy, Klinefelters Syndrome .
It was put out by th AXYS group recently. which is a association for X and Y variations .
You can find them on the internet, but be wary there are lot of groups using axys lettering.
I am sure they could easily send you one.
Dr. Nicole Tartaglia is currently working at the EXtraordinarY.Kids Clinic at the Children's Hospital in Aurora Colorado. She has done research and it is on the internet. You can also find information on the US. National Institute of Health on the internet, which may be helpful in finding information on xxy.
Too bad you didn't go to the chromosome convention held in June. It would have been a great experience for you meeting other families dealing with their child who has xxy, xyy, xxyy or one individual who was xxxxy. These were boys but the convention also included girls with xxx.
I hope this goes through the moderator on this forum.
If you go to the axys variations website, under the title CLINICS, there are several new clinics that treat xxy individual. Mostly in the US, in Los Angeles, Stanford, CA, Wilmington Delaware, Atlanta Georgia, Chicago Illinois and Baltimore Maryland.
The information is too long to put it on this post. But at least it can give you somewhere to go, instead of traveling to Aurora Colorado.
I hope this is helpful. Good luck
I was diagnosed at the age of 24, but when i was younger my mom and dad would always take me to get hearing exams and speech therapy, i didn't talk much until i turned five, or the stories ive heard from my family said i didn't talk much. i wouldn't be over all concerned. i hope this might help you. i assume i turned out pretty normal. though i do have learning issues which might be a totally different factor. but klinefelters syndrome could not be linked to what is actually going on?
Hi, My son has Klinefelters. He is 9 years old, and I got his diagnosis in 2008 through genetic testing in utero. He has had speech delays, and delays in nearly everything. He has been on medication for 4 years now to manage his ADD, and his rage issues. He goes to a special school, has a social worker, etc. It has not been an easy road. But he is a wonderful, funny, fun loving sweet child, too. He is also very intelligent, reads perfectly now, and is extremely inquisitive. He wants to become a medical professional, either a doctor, nurse, or research specialist, specializing in Nephrology. (Kidneys)! Where he got that interest from I have no idea, but in any case I can offer reassurance and an ear to parents of babies and young boys with this. Also I would LOVE to hear from anyone with older kids who have XXY. We are going to be telling him soon, he doesn't know yet, and I would love some assistance and tips from any parents who have broken this news to their sons. Thanks 
There are several support groups on Facebook that I belong to and have helped tremendously. You will be surprised how many are so much like your son and are going through the same thing you are. My son is 4 and we’re also diagnosed in utero. He has many delays as well, but is also the sweetest soul on the planet.
I see u posted this year ago how’s ur son doing?