Re: my baby is diagnosed with Kleinfelter's- any advice?

[Guest guest]

I am so sorry your going through all of this and pray all works out for you here

is a link with pictures of Cystic Hygrom.

http://www.goldbamboo.com/pictures-t4104.html

In this search it's full of pictures of klinefelter Syndrome.

http://www.google.com/search?hl=en & lr= & q=klinefelter%27s+syndrome+pictures & aq=3s\

& aqi=g-s1g1g-s8 & oq=Klinefelters

I am sure one of the men here will get back to with more help.

Co-Moderator

Phil

> From: Lady Canz <dimples783@...>

> Subject: my baby is diagnosed with Kleinfelter's- any advice?

>

> Date: Wednesday, February 3, 2010, 2:06 PM

> Hello everyone. I am here to learn

> and gain some support and

> understanding. I am 14 weeks preganant and my unborn child

> was diagnosed with Kleinfelter' s 47 xxy syndrome. The

> little guy also has a cystic hygroma.. A cystic hygroma this

> early in a pregnancy is a key indicator that there is

> something wrong so we had genetic testing done and we were

> given our diagnosis yesterday. The size of our hygroma is

> larger than a normal Kleinfelter' s baby, but they do not

> have many statistics on this since the science of being able

> to

> view and study young fetuses is still fairly new.

>

> We were also told that only 40% of Kleinfelter' s syndrome

> babies

> survive during pregnancy. With our cyst size that may also

> lower our chances of survival rate. We go for our next

> ultrasound in 2 weeks to see if the cyst is getting bigger

> or smaller. If it is getting smaller than the child should

> survive but still has that 40% chance.

>

> My question as a possible new mom is- what struggles have

> you had with Kleinfelter's? How early were you diagnosed?

> From reading about the disorder, most males don't even know

> they have it till later in life. Is testosterone therapy

> helpful? Did you find that you had many social and learning

> difficulties? Are most surgeries covered by insurances if

> you need them? Have you had any real hard emotional

> struggles with the disorder. What advice do you have for a

> young mother with a baby on the way who has Kleinfelters? I

> have not been able to see pictures of people with the

> disorder. All i have seen are silly diagrams. So not

> helpful! We were told the child will be tall, thin, less

> hair, smaller genitalia, recessed testicles, more hip

> curvature and have possible breast tissue- or be

> asymptomatic.

>

> I really appreciate any thoughts and feelings you can relay

> to me, as I plan to name my baby Chance if he survives. It

> is amazing how science can detect these things so early now,

> but also it is a real stresser on me knowing I have a high

> chance of losing my baby.

>

> Thank you in advance for sharing your stories and

> thoughts. It is very helpful since I am reaching out with

> hopes that someone may have been through or know someone who

> has gone through this. It is such a rare circumstance and i

> know i put a lot of questions out there, but I want to learn

> from actual people, not books and statistics!

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Phil-

thank you. I actually did the google search but honestly the diagrams really

aren't helpful. We were told by the genetic couselor that our kid would be a

tall bean pole w/ less muscle mass and less body hair and then i have had a few

people approach me and send a pic of themselves with the condition and it isn't

true one bit. The book just isn't right all the time and real people (thank you

all) are the honest real truth. The genetic counselor has never met anyone with

Kleinfelters... how is she supposed to know and relate?

Thank you for the info. I will look into it.

>

> > From: Lady Canz <dimples783@...>

> > Subject: my baby is diagnosed with Kleinfelter's- any advice?

> >

> > Date: Wednesday, February 3, 2010, 2:06 PM

> > Hello everyone. I am here to learn

> > and gain some support and

> > understanding. I am 14 weeks preganant and my unborn child

> > was diagnosed with Kleinfelter' s 47 xxy syndrome. The

> > little guy also has a cystic hygroma.. A cystic hygroma this

> > early in a pregnancy is a key indicator that there is

> > something wrong so we had genetic testing done and we were

> > given our diagnosis yesterday. The size of our hygroma is

> > larger than a normal Kleinfelter' s baby, but they do not

> > have many statistics on this since the science of being able

> > to

> > view and study young fetuses is still fairly new.

> >

> > We were also told that only 40% of Kleinfelter' s syndrome

> > babies

> > survive during pregnancy. With our cyst size that may also

> > lower our chances of survival rate. We go for our next

> > ultrasound in 2 weeks to see if the cyst is getting bigger

> > or smaller. If it is getting smaller than the child should

> > survive but still has that 40% chance.

> >

> > My question as a possible new mom is- what struggles have

> > you had with Kleinfelter's? How early were you diagnosed?

> > From reading about the disorder, most males don't even know

> > they have it till later in life. Is testosterone therapy

> > helpful? Did you find that you had many social and learning

> > difficulties? Are most surgeries covered by insurances if

> > you need them? Have you had any real hard emotional

> > struggles with the disorder. What advice do you have for a

> > young mother with a baby on the way who has Kleinfelters? I

> > have not been able to see pictures of people with the

> > disorder. All i have seen are silly diagrams. So not

> > helpful! We were told the child will be tall, thin, less

> > hair, smaller genitalia, recessed testicles, more hip

> > curvature and have possible breast tissue- or be

> > asymptomatic.

> >

> > I really appreciate any thoughts and feelings you can relay

> > to me, as I plan to name my baby Chance if he survives. It

> > is amazing how science can detect these things so early now,

> > but also it is a real stresser on me knowing I have a high

> > chance of losing my baby.

> >

> > Thank you in advance for sharing your stories and

> > thoughts. It is very helpful since I am reaching out with

> > hopes that someone may have been through or know someone who

> > has gone through this. It is such a rare circumstance and i

> > know i put a lot of questions out there, but I want to learn

> > from actual people, not books and statistics!

> >

> >

> >

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

We have men here married with kids it is different for each man I come across

and the ones that find out late in life had the hardest time. At least you know

and can find a good Dr. to care for him. Also read the AACE Guidelines it has

some info in it.

http://www.aace.com/pub/pdf/guidelines/hypogonadism.pdf

Co-Moderator

Phil

> From: Lady Canz <dimples783@...>

> Subject: Re: my baby is diagnosed with Kleinfelter's- any

advice?

>

> Date: Wednesday, February 3, 2010, 2:59 PM

> Phil-

>

> thank you. I actually did the google search but honestly

> the diagrams really aren't helpful. We were told by the

> genetic couselor that our kid would be a tall bean pole w/

> less muscle mass and less body hair and then i have had a

> few people approach me and send a pic of themselves with the

> condition and it isn't true one bit. The book just isn't

> right all the time and real people (thank you all) are the

> honest real truth. The genetic counselor has never met

> anyone with Kleinfelters... how is she supposed to know and

> relate?

>

> Thank you for the info. I will look into it.

>

>

>

>

> >

> > > From: Lady Canz <dimples783@...>

> > > Subject: my baby is diagnosed with

> Kleinfelter's- any advice?

> > >

> > > Date: Wednesday, February 3, 2010, 2:06 PM

> > > Hello everyone. I am here to learn

> > > and gain some support and

> > > understanding. I am 14 weeks preganant and my

> unborn child

> > > was diagnosed with Kleinfelter' s 47 xxy

> syndrome. The

> > > little guy also has a cystic hygroma.. A cystic

> hygroma this

> > > early in a pregnancy is a key indicator that

> there is

> > > something wrong so we had genetic testing done

> and we were

> > > given our diagnosis yesterday. The size of our

> hygroma is

> > > larger than a normal Kleinfelter' s baby, but

> they do not

> > > have many statistics on this since the science of

> being able

> > > to

> > > view and study young fetuses is still fairly

> new.

> > > 

> > > We were also told that only 40% of Kleinfelter' s

> syndrome

> > > babies

> > > survive during pregnancy. With our cyst size that

> may also

> > > lower our chances of survival rate. We go for our

> next

> > > ultrasound in 2 weeks to see if the cyst is

> getting bigger

> > > or smaller. If it is getting smaller than the

> child should

> > > survive but still has that 40% chance.

> > >

> > >  My question as a possible new mom is- what

> struggles have

> > > you had with Kleinfelter's? How early were you

> diagnosed?

> > > From reading about the disorder, most males don't

> even know

> > > they have it till later in life. Is testosterone

> therapy

> > > helpful? Did you find that you had many social

> and learning

> > > difficulties? Are most surgeries covered by

> insurances if

> > > you need them? Have you had any real hard

> emotional

> > > struggles with the disorder. What advice do you

> have for a

> > > young mother with a baby on the way who has

> Kleinfelters? I

> > > have not been able to see pictures of people with

> the

> > > disorder. All i have seen are silly diagrams. So

> not

> > > helpful! We were told the child will be tall,

> thin, less

> > > hair, smaller genitalia, recessed testicles, more

> hip

> > > curvature and have possible breast tissue- or be

> > > asymptomatic.

> > >

> > > I really appreciate any thoughts and feelings you

> can relay

> > > to me, as I plan to name my baby Chance if he

> survives. It

> > > is amazing how science can detect these things so

> early now,

> > > but also it is a real stresser on me knowing I

> have a high

> > > chance of losing my baby.

> > >

> > >  Thank you in advance for sharing your

> stories and

> > > thoughts. It is very helpful since I am reaching

> out with

> > > hopes that someone may have been through or know

> someone who

> > > has gone through this. It is such a rare

> circumstance and i

> > > know i put a lot of questions out there, but I

> want to learn

> > > from actual people, not books and statistics!

> > >

> > >

> > >

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >