Expression of characteristics related to level of mental function?

Cyndi - posted on 01/07/2009 ( 16 moms have responded )

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HI everyone! I am mom to a sweet 2 month old girl who has Down's. She was a surprise--none of our prenatal tests showed that we were at a high risk. We've dodged several bullets with her--so far, no cardiac, vision or hearing problems, and she doesn't exhibit a lot of the possible physical characteristics. My husband and I wonder if this will be related to the level at which she will function mentally. Does anyone have any info on or experience with this? Thanks!

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Brandy - posted on 06/13/2010

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Hi All! To answer some of your questions about Mosaic DS, in order for the Dr. to best test for it they need to look at least a 100 cells. Current research shows Approximately 1 in 27,000 people are diagnosed with mosaic Down syndrome.
Approximately 15% of individuals diagnosed with Trisomy 21 Down syndrome are misdiagnosed and actually have mosaic Down syndrome. For more info. please go to http://www.imdsa.org/Information/mdsfact...

Rita - posted on 06/30/2009

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I googled Mosaic DS and found an article there about it, maybe you'd be able to find info on testing...it was quite a while ago, so I forget what all was in it...seems to me they didn't see major differences (all kids with DS do things at different times and at different levels)

Actually, I just looked up the web page it's www.mosaicdownsyndrome.com , (there were other sites too) but this one has the info you're looking for.

good luck, Rita

Florence - posted on 02/27/2009

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I believe Mosaics also generally have better cognitive function. Beyond that, I have always been told that physical characteristics are not related to cognitive function. I don't know if anyone has ever done a proper study.

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Sheena - posted on 04/24/2010

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this sounds like my story. this is my first child my daughter is 5 month and i don't know much about DS. we do have an appointment on tuesday to see early start and i hope we find out more. i wish you luck

Liza - posted on 04/15/2010

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I have the same story as most of you guys have. My daughter Aya who is 14 mos old is doing very good with her motor skills, but her geneticist said she's in the trisomy 21 category... so it's kinda unusual....

Brandy - posted on 03/28/2010

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My son is now 5 and he also has very mild features.We have always worked with him and have set the same goals for him as we would any other child. he has done very well in keeping up with other children. he does have a speech delay, but is alittle funny....at first we thought he couldnt talk and he was taught sign language at the age of 1 so that we could communicate with him..he learned it very fast. then as he got older, he would only say a few words here and there...now at 5 he can sing a whole song, but wont talk much, basically only what he needs to like if he wants something. So now we are wondering how much of it is a problem and how much is a preference.
All in all, I agree with another posts, they are like other children, and will grow and develop at their own rate and in their own way. My advice would be is to treat them the same and expect the same ....when they have trouble give them more help or try a different method! good luck !

Tereasa - posted on 10/26/2009

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New to the group and loving it. Finally a place to share the joys and trials of having a child with DS. I have met in my adulthood a man who has the MDS. He has a little likeness such as the eyes and a somewhat short stature, but mentally is normal as normal as a person can be. (;

Annie - posted on 06/30/2009

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Hey! I'm new to this group as well, but I was wondering how you got testing to find out about Mosaic DS and what benefits there are to knowing which type of DS my son has...I'm not planning on having any more children (he's our fourth!), so I assummed seeing a geneticist was only if we planned on having more children. My son too has no health issues and doens't seem to have the muscle tone issues (he was rolling over at 2 months!) His DS features are also very slight.

Rita - posted on 05/04/2009

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How's this for a great quote? I just found it.



"The parents of children with down syndrome are like the parents of any other child. Your child's strengths and weakness will only be revealed over time"



Kind of sums it all up doesn't it?

Rita - posted on 05/04/2009

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My feelings are that children with down syndrome come in all shapes and sizes, the same as those who don't have down's. Given opportunities and support, they will rise to the challenges and surprise us all.

My son is almost 7, has no major health issues and surprises me all the time. I may have to slow down for him, but he always reaches the milestones.

Judi - posted on 04/19/2009

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Hi, my daughter is 16 now ! I had her when I was 39. Kelsey was a suprise and has been a very pleasant one ! My doctor told me not to set any limits and to keep her stimulated and we have. She is going to her 2nd Prom next Saturday.

Dilip - posted on 03/30/2009

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Hi Cyndi, I am also a dad to Down's (not out as yet) girl who is 7 yrs plus now. By personal experience, it is suggested that you should make all check-ups periodically according to the Doctor's recommendation. Any other advice required, please feel to contact me at anytime. Regards, Dilip/Bangkok

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my daughter was the exact same way, and she is 16 months old. she is well in the range of 'typical' development, although she's a little small.

Dilip - posted on 03/05/2009

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Hello, I am DIlip, based in Bangkok. I am a Dad (feel also like a Mum) to 7-year old twins, younger one born with DS. With my personal experience on my child, I suggest (your sole decision though) that you do the routine you did / you do with your other mainstream kids. Notice the difference (if any) and that should give you a lead where to head from there. Good Luck, let me know if you need any help. My email ID is ventures2007@rediffmail.com and my mobile is 66.81.8140714.

Seph - posted on 03/01/2009

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Hi Cyndi, I've just joined this group, but I have a 7 month old daughter who has MDS (mosaic down syndrome), she has very few physical characteristics, the only exception being around her eyes. We don't know how well she will function as she gets older, but she is going very well, meeting all milestones at this stage, which may have something to do with being MDS. You should make an appointment to see a geneticist and get her blood tested again, just to see if she does in fact have MDS.

Good luck, I too was surprised at birth with Sienna's diagnosis, how are you going with it all?

Seph

Kimberly - posted on 01/13/2009

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Hi Cyndi.  Nice to meet you!!  I too did not know my daugher had DS until she was born.  All of my prenatal tests came back normal too.  Maddy did have a heart defect which caused her to need 2 surgeries. 



To answer your question....... firstly.... have you seen a Geneticist?  It sounds like your little one could have Mosaic DS.. which is when some of the baby's cells have the normal 46 chromosomes and some cells have 47.  From what I understand, these children have some of the same health issues but just on a much milder scale.  It would certainly be something to look in to. 



 

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