Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 We have several families with children with XYY. Maybe they will speak up here. Kristy Suzanne wrote: Although my little guy is only 3, he is very skinny and tall. He is only a head shorter than his 5 1/2 year old sister. His little legs are short though, so it's his upper body that is long. When we found out while I was pregnant with him about the MDS, we also found out that he is Mosaic XYY. The geneticists are not sure what that extra Y chromosome will do. They think it might counteract some of the MDS, namely the height and weight. Studies show that males with an extra Y chromosome tend to be tall and skinny! We shall see! Needless to say, he's a very rare little boy! Wouldn't change him for nothin'! Suzanne mom to Jordan 5 and Dalton 3 (MDS) > > My son is actually very thin. He is 19 yrs old and about 116 lbs. soaking > wet. The docs were a bit confused at this for the fact that a lot of Down's > teens are usually short and stout, well he is an exception I guess, he is 5'7'' > and thin, he stands taller than me. LOL. Not hard to do. > > Jodie > > > > **************Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker.com! > (http://www.tourtracker.com?NCID=aolmus00050000000112) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Marriah, I have a younger friend, who had her first child...I was on my 6th child... and by a year old I could tell something was wrong...and by almost two I was beyond positive, but she was either in denial, or just didn't know his behavior was not normal. I agonized for 3 months over how to tell her that I believed her son had Autism... and finally, I just decided, to be as gentle as I could...but that valuable time was being lost, and I just felt I HAD to risk upsetting her to say something. I realize your case is different, as she has a diagnosis...yet they aren't getting any therapies for him. Perhaps you could talk to your cousin...ask her to bring it up in conversation...to ask what therapies he's getting, or to tell your story, " well my cousins son has ___ therapy... " etc... Or.... you could just be as caring as possible and take the risk of telling her yourself. It sounds like either she's a bit in denial herself....or she's not getting good advice from her sons doctors. Good luck, Angel In a message dated 7/13/2008 10:44:34 P.M. Mountain Daylight Time, athena3330@... writes: I just found out my friends cousin who I went to school with has mosaic XXY, my friend said that they just pretend nothing is wrong and they dont stimulate him throughout the day at all. He is almost two and doesnt try to crawl yet, I have my son who has MDS to therapy since he was 2 months old, do you guys have any advice how I go about talking to her to take her son into therapy??? I dont want to sound rude or like Im being demeaning in anyway, I want her to go were I go. How should I go about this I have some Ideas but I think Im just worried of her getting mad or embarrassed. Thanx, Marriah Although my little guy is only 3, he is very skinny and tall. He is only a head shorter than his 5 1/2 year old sister. His little legs are short though, so it's his upper body that is long. When we found out while I was pregnant with him about the MDS, we also found out that he is Mosaic XYY. The geneticists are not sure what that extra Y chromosome will do. They think it might counteract some of the MDS, namely the height and weight. Studies show that males with an extra Y chromosome tend to be tall and skinny! We shall see! Needless to say, he's a very rare little boy! Wouldn't change him for nothin'! Suzanne mom to Jordan 5 and Dalton 3 (MDS) > > My son is actually very thin. He is 19 yrs old and about 116 lbs. soaking > wet. The docs were a bit confused at this for the fact that a lot of Down's > teens are usually short and stout, well he is an exception I guess, he is 5'7'' > and thin, he stands taller than me. LOL. Not hard to do. > > Jodie > > > > ************ **Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker. com! > (http://www.tourtrac ker.com?NCID= aolmus0005000000 0112) > > > [Non-text portions of this message have been removed] > Kristy Colvin IMDSA President ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa. org http://www.mosaicmo ments.today. com [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] ------------------------------------ Become a member of IMDSA today at http://www.imdsa.org ******************************************************* Purchase your MDS awareness bracelet today!http://www.imdsa.org/Awareness/aware.htm ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* To unsubscribe from this list, send e-mail to: MosaicDS-unsubscribeegroups ************************************************* To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ *************************************************Yahoo! Groups Links **************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 I just found out my friends cousin who I went to school with has mosaic XXY, my friend said that they just pretend nothing is wrong and they dont stimulate him throughout the day at all. He is almost two and doesnt try to crawl yet, I have my son who has MDS to therapy since he was 2 months old, do you guys have any advice how I go about talking to her to take her son into therapy??? I dont want to sound rude or like Im being demeaning in anyway, I want her to go were I go. How should I go about this I have some Ideas but I think Im just worried of her getting mad or embarrassed. Thanx, Marriah Although my little guy is only 3, he is very skinny and tall. He is only a head shorter than his 5 1/2 year old sister. His little legs are short though, so it's his upper body that is long. When we found out while I was pregnant with him about the MDS, we also found out that he is Mosaic XYY. The geneticists are not sure what that extra Y chromosome will do. They think it might counteract some of the MDS, namely the height and weight. Studies show that males with an extra Y chromosome tend to be tall and skinny! We shall see! Needless to say, he's a very rare little boy! Wouldn't change him for nothin'! Suzanne mom to Jordan 5 and Dalton 3 (MDS) > > My son is actually very thin. He is 19 yrs old and about 116 lbs. soaking > wet. The docs were a bit confused at this for the fact that a lot of Down's > teens are usually short and stout, well he is an exception I guess, he is 5'7'' > and thin, he stands taller than me. LOL. Not hard to do. > > Jodie > > > > ************ **Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker. com! > (http://www.tourtrac ker.com?NCID= aolmus0005000000 0112) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Hi Marriah This is definitely a hard situation. Maybe you could just tell her about your therapist and " assume " she is taking her son to therapy and ask her what therapist they go to. Or, offer your help by saying " I know how hard it is to get good therapists, would you like me to help you get one? " Let her know that you are concerned and let her know that with therapy her son could walk. XXY does not mean the child can't walk, in fact, there may be something more going on with him. It does cause developmental delays though. So, it could just be a matter of therapy. Even if she does get upset, she will more than likely get over it and hopefully if someone says something she will get help. Good Luck Kristy marriah buhman wrote: I just found out my friends cousin who I went to school with has mosaic XXY, my friend said that they just pretend nothing is wrong and they dont stimulate him throughout the day at all. He is almost two and doesnt try to crawl yet, I have my son who has MDS to therapy since he was 2 months old, do you guys have any advice how I go about talking to her to take her son into therapy??? I dont want to sound rude or like Im being demeaning in anyway, I want her to go were I go. How should I go about this I have some Ideas but I think Im just worried of her getting mad or embarrassed. Thanx, Marriah Although my little guy is only 3, he is very skinny and tall. He is only a head shorter than his 5 1/2 year old sister. His little legs are short though, so it's his upper body that is long. When we found out while I was pregnant with him about the MDS, we also found out that he is Mosaic XYY. The geneticists are not sure what that extra Y chromosome will do. They think it might counteract some of the MDS, namely the height and weight. Studies show that males with an extra Y chromosome tend to be tall and skinny! We shall see! Needless to say, he's a very rare little boy! Wouldn't change him for nothin'! Suzanne mom to Jordan 5 and Dalton 3 (MDS) > > My son is actually very thin. He is 19 yrs old and about 116 lbs. soaking > wet. The docs were a bit confused at this for the fact that a lot of Down's > teens are usually short and stout, well he is an exception I guess, he is 5'7'' > and thin, he stands taller than me. LOL. Not hard to do. > > Jodie > > > > ************ **Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker. com! > (http://www.tourtrac ker.com?NCID= aolmus0005000000 0112) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Thats a great Idea, thanx you gise, also just a little correction, I meant to say my friends cousins son has Mosaic XXY. Thanks for the advice everyone, there is a BBQ coming up and shes going to be there, so I m gonna try this out. Marriah Although my little guy is only 3, he is very skinny and tall. He is only a head shorter than his 5 1/2 year old sister. His little legs are short though, so it's his upper body that is long. When we found out while I was pregnant with him about the MDS, we also found out that he is Mosaic XYY. The geneticists are not sure what that extra Y chromosome will do. They think it might counteract some of the MDS, namely the height and weight. Studies show that males with an extra Y chromosome tend to be tall and skinny! We shall see! Needless to say, he's a very rare little boy! Wouldn't change him for nothin'! Suzanne mom to Jordan 5 and Dalton 3 (MDS) > > My son is actually very thin. He is 19 yrs old and about 116 lbs. soaking > wet. The docs were a bit confused at this for the fact that a lot of Down's > teens are usually short and stout, well he is an exception I guess, he is 5'7'' > and thin, he stands taller than me. LOL. Not hard to do. > > Jodie > > > > ************ **Get the scoop on last night's hottest shows and the live music > scene in your area - Check out TourTracker. com! > (http://www.tourtrac ker.com?NCID= aolmus0005000000 0112) > > > Quote Link to comment Share on other sites More sharing options...
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