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View Full Version : My son was diagnosed w/Kleinfelters 2 yrs ago.


pati3
06-07-2006, 05:18 PM
My son was diagnosed w/Kleinfelters 2 yrs ago. (he's now 20) I had never heard of it. What it means is there is at least one extra x chromosone. He also didn't have facial hair, no deepening of the voice, small testicles, and no muscle mass. He did however have some pubic hair and hair under his arms. We started w/ testosterone gel, which didn't seem to help (although I don't know if he really applied it daily) then he was switched to testosterone injections. Please watch to make sure you have the correct dosing. At first it was too much and he became very aggressive. Once it was adjusted, it's fine. His voice has deepened, he has some muscle mass. He will always be sterile. I'm sure that you have found out by now that kids with this syndrome are usually pretty impulsive, and tend to get into trouble. The first thing that the endo said to me was that kleinfelters boys usually end up in jail. My son is quite immature, and as long as we keep a rather tight rein on him, I believe that he will continue to be a productive human being (and prove that dr. wrong) I would love to know how your son is doing, please reply

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tommy124
06-08-2006, 01:26 PM
I agree with the suggestion to take him to the endocrinologist. If neither testicle is producing testosterone, he will need testosterone replacement in order to hit puberty and look normal...as in growing body hair, having his penis grow to his normal size, his voice changing, etc. I wouldn't delay...not hitting puberty is a treatable trouble he doesn't need. Along with the social repercussions, he also has possible sterility to deal with. The last thing he needs is harassment from other boys, being too shy with girls, etc. The earlier you two know what is going on, the better. You at least will have your alternatives laid out, and can make some choices.

JinL
06-11-2006, 09:15 AM
The doctor is wrong. All KS guys with the extra X are not sterile. Very few KS guys with the extra X go to jail.

Research the Klinefelters Mosaic. We can have some active sperm & can have children.

Have his estrogen E2 & Testosterone levels checked. Keep a copy of the results. His estrogen should be in the lower 1/3 of the range. The testosterone should be in the uupper 1/2 of that range.

Many 47-XXY guys do grow boobs, gynecomastia. It is caused by the extra chroms in the chest area. The extra estrogen receptors grab the extra estrogen & grow breasts. I kept mine. Some have them removed & sometime they grow back if the excess estrogen is still present. That surgery costs about $7000.00 each time it is done. Millions of us have decided to keep ours.

It seems that a large number of 47-xxy are also loners partly because of the breasts. Many are into spatial type jobs like computer proramming & engineering.

The males with extra Y are usually more aggressive & many of them do wind up in jail.

hayfarmer
06-14-2006, 12:19 AM
How about HCG injections to supplement the Testosterone injections? Wouldnt that be wise to also develop the testicles and keep your son fertile in the event he wants to be fertile?

JinL
06-14-2006, 09:23 AM
Low dose HCG 3 times a week is the first choice before testosterone injections. I should have stated that.
Thanks

june1957
12-12-2007, 04:23 PM
My Husband has kleinfelters, and he is sterile but has a normal sex drive, he has a few health problems, and has short term memory loss which gets worse when he is under stress, he cannot handle stress very well, it wipes him out, we/he copes very well with his disabilities, he is a quiet man but likes a good debate, he drives and when he was young he learned how to fly a glider plane, only giving up when his physical problems became worse, when we met I did not know any of his problems and had never heard of kleinfelters, so I fell in love with the man, he is brilliant, the problems he has are mine now but I would not have hiim any other way.
what I am trying to say is please don't forget that you son is a person with maybe dreams too, if you make is problems too big he can get lost in them all. if you would like to talk to me please fell free to talk with me. i am a friend

:) June

pati3
12-12-2007, 04:53 PM
Hi June,
You sound incredibly sweet. Thank you for your nice reply. There seems to be alot more than Kleinfelters going on w/my son, but it is just a good, convinient label to hang on all of the woes. Since the time of my last writing, my son aquired many credit cards - bought a ton of things for his girlfriend. once he pegged all the cards, she dumped him. He was living in his car for a few months, ended up living with a friend and had to buy that guy's mom a laptop computer so she would let him live in her unfinished basement. He ended up in jail for about 1 month supposedly someone left drugs in his car, he still denys knowing anything about them. He cannot hold a job, steals. Sometimes, I don't even think that my life is real. I am afraid to let him go back on the testosterone as that will make him more aggressive, but I have an appt set for March w/ a Neurologist who will also prescribe other meds. I describe my son as the nicest kid that you can't trust. I know that there is really not much that any of you can say, but it is nice to be able for me to be able to say these things.

hayfarmer
12-13-2007, 12:40 AM
Pati,
Please look into the HCG with the doctor's visit you are about to have. If it is not too late (I don't know your son's age) it may be possible for him to be fertile. Despite the problems he may be having now, it is very possible he may grow out of those problems and want a fammily some day.

Bengie
12-13-2007, 12:12 PM
Hi June,
You sound incredibly sweet. Thank you for your nice reply. There seems to be alot more than Kleinfelters going on w/my son, but it is just a good, convinient label to hang on all of the woes. Since the time of my last writing, my son aquired many credit cards - bought a ton of things for his girlfriend. once he pegged all the cards, she dumped him. He was living in his car for a few months, ended up living with a friend and had to buy that guy's mom a laptop computer so she would let him live in her unfinished basement. He ended up in jail for about 1 month supposedly someone left drugs in his car, he still denys knowing anything about them. He cannot hold a job, steals. Sometimes, I don't even think that my life is real. I am afraid to let him go back on the testosterone as that will make him more aggressive, but I have an appt set for March w/ a Neurologist who will also prescribe other meds. I describe my son as the nicest kid that you can't trust. I know that there is really not much that any of you can say, but it is nice to be able for me to be able to say these things.

you took him off TRT? He needs that for his health. All his problems may be enlarged because he has self image problems and cant have sex. In otherwords he may be very frustrated and his only way to express that is acting bad.

Jinxy285
12-13-2007, 01:50 PM
Hello, I do not know anything about this disease but what I wanted to say was this!!! It concerns me that you are about to take your son to a neurologist who will put him on God knows what kind of ADHD or anti-depresent drugs etc, when like with many older men their depresion and feelings of low self worth are due to hormone issues. I would advise you to find a DR, I would imagine an Endocronologist, who is a specilist on this disease. then I would try to take him to a therapist, becuase I bet that if he has been hearing all this since probalby puberty then he feels like a freak and an outcast to some extent.. If he goes to the right Dr who knows how to help him and gives him some hope for a normal like and family down the road that could make all the differance in the world.....

good luck

 
 
 




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