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Old 02-17-2008, 07:17 AM   #1
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donna 1504 HB User
my daughter is 15 years old could this be mosaic down syndrome?

my daughter is 15 years old and has always had health issues. I am wondering if this has been overlooked, she may have mosaic down syndrome. I refused the test for ds when pregnant, and she has never been tested. Anyone with info please help

 
Old 02-23-2008, 06:28 AM   #2
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Re: my daughter is 15 years old could this be mosaic down syndrome?

I know Down syndrome is congenital disease. It is diagnosed since birth. If ur daughter is 15, it is too late to diagnose her as Down and i think it is not a possible. What s/s do ur daughter show?

 
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Old 02-26-2008, 11:28 AM   #3
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Question Re: my daughter is 15 years old could this be mosaic down syndrome?

Hi,
Did they suspect DS at birth?? Just because she has health issues dose mean she is DS, Is she some what mentally slow? If so I would get her tested because there are allot of benfits she can have access to if she is- espically once she is 18 years of age.
Karen

 
Old 03-05-2008, 12:49 PM   #4
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Re: my daughter is 15 years old could this be mosaic down syndrome?

It is NEVER too late to diagnose Down Syndrome. We believe that our 9-year old daughter has mosaic down syndrome - she has significant cognitive delays (but can now read and is learning simple math), had a ventrical septal defect in her heart at birth (although this closed on its own by 18 months), and has slight epicanthal folds around her eyes.

We have been through a myriad of tests - all have returned normal results. Extensive chromosomal testing showed no abnormalities, the MRI was normal, and the skin test they did for Mosaic down syndrome came back negative. It is possible to have a form of MSD that cannot be diagnosed, because the affected cells can be in parts of the body where you can not simply biopsy (brain, heart, etc.). With MDS, only a percentage of the body's chromosomes are affected - could be as few as 5% or as many as 90%!

Also - you cannot usually get any disability benefits for the mosaic form of down syndrome, because many who have MDS are able to function fairly well. The Social Security Administration has a whole section related to this. But that is the least of your worries I'm sure.

Have you been to see a genetic specialist at your local hospital? That should be the first step. They can do a simple blood test to see if any of her chromosomes are affected - also the skin test is able to diagnose many cases of MDS. It just didn't work in our case.

We started our daughter in special education at the age of 3, and it has made a huge difference in her life. We may never get a formal diagnosis, but I believe she does have MDS based on symptoms.

Please let me know if you have any further questions, and good luck to you.

Best,

Julia

 
Old 03-13-2008, 12:32 PM   #5
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amber2005 HB User
Re: my daughter is 15 years old could this be mosaic down syndrome?

Julia - We are in the same boat with our daughter, Mary. I suspect she has MDS, based on my research and reading between the lines of what our geneticist has said about an "inconclusive origin of her developmental delays". Mary is 3 and has been through the battery of blooad tests and MRI (except skin test) - all are normal. But she is considerably delayed in speech, fine motor and seemingly cognitive funtioning. She has wide-set eyes, curved pinky fingers, space between her toes and flat back of the head. I wonder if a skin test should be a next step. Our geneticist did not offer it. We have been treating the symptoms (and enjoying our darling daughter) and not focusing too much on diagnosis. But I would like to have another child and that means answers re: our daughter with suspected MDS. We had never even heard of it until yesterday when our wonderful new speech therapist mentioned it. She said our daughter's hands look and feel like those of DS.

What kind of special schooling was best for your daughter at 3? We struggle to find ways to get our daughter focused and trying new things. She is trying to talk, so that's good. But her self-motivation for learning new skills seems pretty low. I had to absolutely force her to start eating with a spoon rather than her hands, and potty training will be another battle. Her younger sister just loves to learn and try new things. I want to find a way yo motivate our little MDS, but it has been tough to find ways. Your thoughts and ideas would be greatly appreciated!
--Amber

 
Old 04-11-2008, 11:25 AM   #6
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Re: my daughter is 15 years old could this be mosaic down syndrome?

Quote:
Originally Posted by donna 1504 View Post
my daughter is 15 years old and has always had health issues. I am wondering if this has been overlooked, she may have mosaic down syndrome. I refused the test for ds when pregnant, and she has never been tested. Anyone with info please help
Mosaic down sydrome basically means that not every cell is effected, if my memory recalls me, less than 3 % of children/adults with downs have mosaics. Usually, mosaic downs don't look so effected, and progress quicker. When my son was born 18 yrs ago I was hoping he would have mosaic!...sadly not the case.

 
Old 07-10-2008, 12:59 PM   #7
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momtofour HB User
Re: my daughter is 15 years old could this be mosaic down syndrome?

I know someone with a young son who has T21 and after much research was sure her older daughter- 8 years- had mosaic. They tested her and she does. Point being, I think there are a lot of people out there with cognitive delays who don't know they have ds. And, like others have said mosaic downs can affect as little as 5% of your cells.

But, I do want to point out that there are a lot of professionals and parents who disagree that the fact your child has mosaic means they will have less health and learning problems.

Go to her Dr. and request testing. Knowledge is power.

 
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