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Post by Chester on Jan 19, 2007 16:04:38 GMT -5
Today was our oldest son's geneticist appointment. He's got a bunch quirks that added up to more than ADHD, so in we went.
Here's one of my biggest pet peeves. How can a Dr. be an hour and half behind, when our appointment was at 10:00 am?! I had JT with and luckily he was a good, good man.
Anywho, she spent some time with me talking about JT and DS. I found it very interesting that the genetic counselor (not Dr.) spent the majority of the time talking about birth control for young adults with DS. She listed off the reasons as; he may not be able to balance a check book, let alone the challenge of raising a child, and I would have to raise the baby and that a good number of pregnancies of people with DS end up being miscarried. She literally went on and on about the importance of birth control. JT is 4 1/2. My focus is having the child pee in the toliet. Somewhere in my brain, I had it stored away that most people with DS are infertile. She didn't mention that, and I didn't bring that up, I was so ready to move on. I'll have to do some googling to figure that out.
I thought it was an odd conversation to be having.
Dawn Anyone know anything about xyy syndrome?
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Post by wrblack on Jan 19, 2007 17:18:40 GMT -5
No, don't really know anything about XYY Syndrome, except some people would question calling it a syndrome--just a condition. See en.wikipedia.org/wiki/XYY_syndromeInteresting note from that, "The first published report of a man with a 47,XYY karyotype was by Dr. Avery A. Sandberg and colleagues at Roswell Park Memorial Institute in Buffalo, New York in 1961. It was an incidental finding in a normal 44-year-old, 6 ft. [183 cm] tall man of average intelligence who was karyotyped because he had a Down syndrome daughter." So, indirectly, Down syndrome led to discovery of XYY. -- Bob
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Post by Debbie on Jan 19, 2007 17:34:27 GMT -5
Dawn,
This is a very big concern for educator's, professional's, and parents, that young adults with Down syndrome may make some unwise decisions in regard to sex. I understand up to a point but considering where you are at, you have to admit, this is a important subject to talk about.
I have read about a young woman who has Down syndrome that had a baby. This was quite a long time ago. She, I think, lived in New York somewhere. She had the baby and from what I remember, I think the father did not have Down syndrome. I am not sure if he had a disability. I read this in a magazine. There was a picture of them with their baby. There was a battle over if she could be actually take care of the baby. She had some people that helped her and she won the rights to take of her baby.
There is quite a few things said about us having children. I think that this can happen however it all depends on the supports we have along with job security and government help and such.
Sometimes we may not think about the consequences of our behavior and until something likes this happens. I firmly support the teachings of this but, I know it can be touchy subject.
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Post by andrewsmom on Jan 19, 2007 20:29:33 GMT -5
sorry...no info on XXY syndrome here either. But wow...I'm kind of shocked at the genetic counselor focussing so much on the birth control when your son is only 4 1/2. I wouldn't want my daughter's doc to focus on that at her age....and she's almost 7! Just my opinion but... aren't there other things that need more attention at his young age??? Unless the kids these days are starting W A Y younger then I thought. ;D ;D -Trisha
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Post by Emilysmom on Jan 19, 2007 21:08:22 GMT -5
Dawn.....that wouldn't have been what I would have wanted a doc to focus on either! But then, when we went to our very first visit with a geneticist after Emily was born, one of his very first questions to my husband and I was "And are the two of you related in any way, other than marriage"??? It took us a second to realize what he was asking! Not what we wanted to talk about at that point either.
Susan
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Post by luvmy3kids on Jan 19, 2007 23:14:40 GMT -5
I am also surprised that she was talking about this with you right now this early. I haven't heard that most people with ds are infertile but I would be interested in knowing more about it.
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Post by meghans_mom on Jan 20, 2007 19:11:47 GMT -5
From DS-Health "Significantly impaired fertility of both sexes is evident in the Down syndrome population (Rogers and Coleman, 1992). While males have long been assumed to be sterile, Sheridan reports one case of a cytogenetically normal male infant that was fathered by a man with Down syndrome (Sheridan et al, 1980). Women have impaired but still significant fertility: a number of reviews document women with Down syndrome carrying pregnancy to term and delivering infants with and without Down syndrome (Bovicelli et al, 1982; Rani et al, 1990)"
laurie
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Post by Jessie on Jan 21, 2007 12:29:31 GMT -5
I agree, kind of weird to discuss that at this point in JT's life! Susan . . . they really asked you guys that? Oh my. Guess I could look on line, but my recollection of fertility statistics is something like women w/Ds have a 50% chance of conceiving and 50% of those births will result in a child with Ds . . . sound right? I believe there are only 3 or 4 documented cases of males with Ds being able to father a child. Jessie
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Post by MB on Jan 21, 2007 20:02:23 GMT -5
Susan,
"Are you related in any other way than marriage?" Do you look that much alike? LOL!!!
mb
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Post by Chester on Jan 22, 2007 11:41:27 GMT -5
Thanks to everyone for sharing your stats and stories!
The counselor we saw, told us that she had appointments with with two families with new borns with DS that afternoon. Now I"m curious if they heard the birth control lecture too.
The MD's educated guess is that Cory has xyy. The Karotype takes 6 weeks. I'm not sold yet. Cory is a little guy, not at all tall. The counselor was suppose to give us some paper work on xyy, but I think she got herself so wrapped up in birth control for the 4 1/2 year old that she forgot....lol.
Dawn
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