Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Welcome.... Ariel has never really had many features of DS..when she was born the doctor thought that she might have s Syndrome,which was why he ran the test. But its funny both my Mom and I say that you can tell when she isnt feeling well or that she is very tired because she looks " Downsy " I do see a change in her appearance a little as she has gotten older..Maybe in part to her nose getting bigger (nasal bridge)but overall not all that much. Welcome again...How old is Luke? Mom to Ariel almost 11 and the twins almost 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hello Amy my name is Cherica and I would like to welcome you to the group. I recently signed up also because I am 7 mos. pregnant with an MDS child, and I also needed some information about everything. The group has helped me alot with q & a that I has especially as far as what to expect. They will help you with any questions that you have so feel free to ask them I know I did. Welcome and Blessings to you, your beautiful son, and family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Maureen said something that I have said, and think, often... some people think the grass is greener over here in Mosaictown...(made myself giggle) with the lesser features.....but really it's not always!! I too often wish people could see it more in , because they don't understand why he " talks different " or why he has a hard time answering a strangers question, or why he's slower to react to things, or why he may react inappropriately sometimes... Then I have to decide if I feel like explaining to this nobody all my sons problems, or if I'm just going to smile and let them wonder or let them think I'm some awful mother or whatever else they might be thinking... 's DS features became more prominent as he got older. I've had more than one geneticist say they understand why he wasn't diagnosed as an infant, because looking at his pictures, they don't see the down's... but his eyes are a little more down's looking now, and the little things only professionals look for are apparent now, like the lower ears, and the nasal bridge, etc We have a picture page... and I always do this... announce that we have a page, but have to ask someone else to provide WHERE it is, cause it moved and I'm lost now.. LOL ~~ANGEL~~ Mom to: , 11, Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9, Jaeda 8 and Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 see.. kristy beat me to it... posting the page for the pictures... (I'll go bookmark that now!!! lol) ~~ANGEL~~ Mom to: , 11, Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9, Jaeda 8 and Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Hi Amy and once again, welcome to our family! Often you will find that a child with MDS does not have all the facial characteristics as one with Ds due to the percentage of " typical " cells. Often, when a child is alert and awake, the physical characteristics are not as apparent, because they are able to keep their facial muscles tight. When they are tired or not feeling well, the physical characteristics appear to be more prominent because they have relaxed their facial muscles.(have you ever looked at yourself in the mirror after a long night or feeling ill? you usually do not look your best) Also, because a person with MDS has a percentage of typical cells, those typical cells are constantly rejuvenating and although this never makes the Down syndrome cells go away, it is possible to have a lesser percentage than before. Because of this, the physical characteristics can change as the child grows. (This is not always the case, but it is known to happen) More than likely, your little Luke's characteristics change when he is sleepy or awake. I would like to invite you to visit our website and our photo album! The website is: HTTP://www.imdsa.com you can click on the " general " link to access the photo album. Once you are there, put in vktphipps for the ID and mds for the password. This is password protected to protect our families and children. If you would like to add Luke's picture to our album, just send your picture to our secretary, Twomey, at mosaicdownsyndrome@... I look forward to hearing more about you and Luke! Kristy Colvin IMDSA President Mom to Arron 23, 19, Tim 18MDS, Stevan 17, and Garrett 8 shootingstar7801 wrote: hi all--I'm the new member My name is Amy and my son's name is Luke. We live in Memphis, TN. I did not have any of the pretesting, so it was a surprise that Luke has DS. After a testing by the hospital " just to be sure " , it was confirmed that Luke has Mosaic. Now I'm trying to find out all I can about it and converse with other people who have been affected by it. No health problems for Luke yet (crossing my fingers!) other than mitral valve prolapse (heart) but the cardiologist isn't concerned about it right now. Anyway, sorry this is long, but my question is: have any of you with older children seen a decrease in the physical characteristics of DS as they have aged? My son has the facial features of DS, but sometimes when I glance at him, his eyes seem to be changing shape. Is it just me? Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
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