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TOPIC TITLE: Mosaic Down Syndrome
Created On 1/22/06 12:05 AM
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WaitingforMoshiach
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Joined: Jan 2006

1/22/06 12:05 AM
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We gave birth to a chilld three and a half years ago who is a Mosaic Down Syndrome child. I was 47 and my husband was 50 when he was born. There were no signs in pregnancy of this condition and it came as a total shock to us. I would like to know if there is anyone out there with a similar situation.He is our eighth child. In case anyone is wondereing what this condition is, I will explain. It is a condition where the child is a mixture of normal cells and Trisomy cells. In our case, our son is 18% Down Syndrome and 82% regular child. We had no idea this condition existed until it happened to us. I am hoping that I can find someone to share experiences with.


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Waiting for Moshiach
 
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eagle wings
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1/24/06 7:58 AM
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I know that there is a non-Jewish board on Mosaic DS. I doubt that you would have enough people for such a thing, frum. I am sure you could find it with search.

I know of a few frum people with kids with Mosaic DS, but they don't have computers.Lots of luck


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"Let GO and Let G_D"
 
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rina miriam
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2/22/06 9:34 AM
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Dear wfm,
Hi!
I'll have to pass on the words of a ds mom:"if youi have to have a syndrome ds is the rolls royce of the syndroms out there.

yes, i know how that sounds...

Anyway, we did whatever research we could about mds last year when our geneticist thought that my daughter had it. since then she's had a major regression and we're back to square 1!

Basicallly the concept is that mosaicism even at the same precentige will rarely affect 2 children the same way, depending where the ds cells are.

the largest group study on mds children consisted of 30 children and a survey of 46 parents.
In short, not much!

What they did find is that all of the children developed fine till age 6 mts. assuming we leave out health problems common with ds.

At any rate, the point is that you know about ds and the worst that can happen with ds and that b'ez"H it won't be "that bad"

I wish you a lot of hatzlacha!

I hope I didn't waste your time!
 
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Moshiach Now
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1/21/07 10:42 AM
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Hi,
How do they determine if a child is Regular DS or Mosaic? They told me at birth that my child is probably DS, but to wait for the test results. However he is showing all the signs and no one so far has gotten back to me with test results.
 
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ImaD
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1/21/07 5:04 PM
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Dear MoshiachNow,
The results of the karyotype will determine if your child has DS, and may determine if it is Mosaic or the much more common nondisjunction DS. For excellent information take a look at this site established by a pediatrician who is the proud father of a son with DS

http://www.ds-health.com/

Many people, seeing our son, have told us "you'll see,you will have nachas from him" , to which we reply "we already do". Whatever the results of the karyotype are, may you have much true nachas from your baby. I am sure you will.
bracha v'hatzlacha
ImaD


Edited: 1/21/07 at 5:05 PM by ImaD
 
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