Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Wow! You're on the ball here! I like that! I am and I have 3 children. My oldest and youngest are typical children but my middle one is my 'special' child. never really looked right (for lack of a better word) to me. He was born with Craniosynostosis (premature fusion of the plates of the scull) which was corrected with surgery on his 8 week birthday. I attributed his different features to that and we moved on ot the next obstacle. He had 'silent' reflux, cried day and night for 3 years, had 26 ear infections in his first 2 years of life, didn't sleep well (still doesn't at age 8 but at least he can put himself back to sleep now!), he was delayed on all his developmental milestones and has low tone. He has astigmatism and wears glasses for that, became epileptic at age 3, came off his meds for that at age 6 and is doing well in that aspect now. He has also been diagnosed with ASD. He is 2 years behind in school but he is mainstreamed and did very well this year! We had genetic testing (I believe it was an analysis and possibly a FISH test?) done when he was about 2 or 3- can't remember for sure now) and it did not show any abnormalities despite his oddities. I have read that a blood test is not always reliable in detecting MDS and that is why I'm here. I want more information on it and to hear other people's stories before I put him through any more tests. Normally, I wouldn't worry about having a name for the condition but I know that people with DS can have subsequent health problems so I'm giving it consideration. Here is a little more info about . He is microcephalic with a flat back to his head, his eyes are wide set, his philtrum (area between the nose and mouth) is long, ears are a bit low, fingers are a bit short... I'll post a picture when I'm done here. He has many findings that are consistant with some sort of genetic something but it has not yet been discovered. Did any of you have a normal chromosome analysis before your child was DX'd with MDS? Thanks for any and all information! > > Hi Everyone > We have a new family joining us today! Here is what they had to say.... > > Hello! I am a mother to a wonderful son who has had many medical difficulties and it was mentioned to me that he may have MDS the other day so I'm looking for more information. > Thanks! > > Welcome to our family! I am so glad you have joined us! Please tell us all about you and your son. How old is he? Did the doctor suggest he has mDs? Please feel free to ask any questions you have and we will be happy to share our experiences. > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > SAVE THE DATE! JULY 10-12 Cincinnati, Ohio USA > BUILDING BRIDGES FOR DOWN SYNDROME > RESEARCH & AWARENESS CONFERENCE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Hello - You will find that you can not post a picture to the elist - but you can post it to the web site - I forget who you have to contact to get a picture posted to the photo album (I remember the password to the album). has no DS features but she is far sighted and has an asytig- thingy as well (spelling is not my strong suit) - What is silent reflux? had a duodobnal webbing fixed at age 3 - the doctors did not want to put her through an upper GI - but think of how many years pain we could have avoided if we did it when I first mentioned it. She also had a silent PDA in her heart that no one saw until she started complaining of heart pain and I brought her to a cardiologist and they did an ECHO and found it - she had that fixed at 8! is also mainstreamed and is about 2 years behind in math and reading (I will have her only a year behind in reading by the end of the summer - my goal) Welcome to the list - if you have any questions just ask someone has already been there or done that. We have adults with MDS on this list - lots of parents with babys - quite a few parents with children and a few teens or parents with teens. Darlene - Mom to (12) and (10) On Thu, Jun 25, 2009 at 1:51 PM, damomma1998 wrote: > > > > Wow! You're on the ball here! I like that! > > I am and I have 3 children. My oldest and youngest are typical > children but my middle one is my 'special' child. never really looked > right (for lack of a better word) to me. He was born with Craniosynostosis > (premature fusion of the plates of the scull) which was corrected with > surgery on his 8 week birthday. I attributed his different features to that > and we moved on ot the next obstacle. He had 'silent' reflux, cried day and > night for 3 years, had 26 ear infections in his first 2 years of life, > didn't sleep well (still doesn't at age 8 but at least he can put himself > back to sleep now!), he was delayed on all his developmental milestones and > has low tone. He has astigmatism and wears glasses for that, became > epileptic at age 3, came off his meds for that at age 6 and is doing well in > that aspect now. He has also been diagnosed with ASD. He is 2 years behind > in school but he is mainstreamed and did very well this year! > > We had genetic testing (I believe it was an analysis and possibly a FISH > test?) done when he was about 2 or 3- can't remember for sure now) and it > did not show any abnormalities despite his oddities. I have read that a > blood test is not always reliable in detecting MDS and that is why I'm here. > I want more information on it and to hear other people's stories before I > put him through any more tests. Normally, I wouldn't worry about having a > name for the condition but I know that people with DS can have subsequent > health problems so I'm giving it consideration. > > Here is a little more info about . He is microcephalic with a flat > back to his head, his eyes are wide set, his philtrum (area between the nose > and mouth) is long, ears are a bit low, fingers are a bit short... I'll post > a picture when I'm done here. He has many findings that are consistant with > some sort of genetic something but it has not yet been discovered. > > Did any of you have a normal chromosome analysis before your child was DX'd > with MDS? > > Thanks for any and all information! > > > > > > > > > Hi Everyone > > We have a new family joining us today! Here is what they had to say.... > > > > Hello! I am a mother to a wonderful son who has had many medical > difficulties and it was mentioned to me that he may have MDS the other day > so I'm looking for more information. > > Thanks! > > > > Welcome to our family! I am so glad you have joined us! Please tell us > all about you and your son. How old is he? Did the doctor suggest he has > mDs? Please feel free to ask any questions you have and we will be happy to > share our experiences. > > > > Kristy Colvin > > IMDSA President > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org > > http://www.mosaicmoments.today.com > > SAVE THE DATE! JULY 10-12 Cincinnati, Ohio USA > > BUILDING BRIDGES FOR DOWN SYNDROME > > RESEARCH & AWARENESS CONFERENCE > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 duodenal - that is what I get when I hit the send button with out spell checking Darlene - Mom to (12) and (10) On Thu, Jun 25, 2009 at 4:11 PM, Darlene Benoit wrote: > Hello - > > You will find that you can not post a picture to the elist - but you can > post it to the web site - I forget who you have to contact to get a picture > posted to the photo album (I remember the password to the album). > has no DS features but she is far sighted and has an asytig- thingy as well > (spelling is not my strong suit) - What is silent reflux? had a > duodobnal webbing fixed at age 3 - the doctors did not want to put her > through an upper GI - but think of how many years pain we could have avoided > if we did it when I first mentioned it. She also had a silent PDA in her > heart that no one saw until she started complaining of heart pain and I > brought her to a cardiologist and they did an ECHO and found it - she had > that fixed at 8! is also mainstreamed and is about 2 years behind in > math and reading (I will have her only a year behind in reading by the end > of the summer - my goal) > > Welcome to the list - if you have any questions just ask someone has > already been there or done that. We have adults with MDS on this list - > lots of parents with babys - quite a few parents with children and a few > teens or parents with teens. > > Darlene - Mom to (12) and (10) > > On Thu, Jun 25, 2009 at 1:51 PM, damomma1998 wrote: > >> >> >> >> Wow! You're on the ball here! I like that! >> >> I am and I have 3 children. My oldest and youngest are typical >> children but my middle one is my 'special' child. never really looked >> right (for lack of a better word) to me. He was born with Craniosynostosis >> (premature fusion of the plates of the scull) which was corrected with >> surgery on his 8 week birthday. I attributed his different features to that >> and we moved on ot the next obstacle. He had 'silent' reflux, cried day and >> night for 3 years, had 26 ear infections in his first 2 years of life, >> didn't sleep well (still doesn't at age 8 but at least he can put himself >> back to sleep now!), he was delayed on all his developmental milestones and >> has low tone. He has astigmatism and wears glasses for that, became >> epileptic at age 3, came off his meds for that at age 6 and is doing well in >> that aspect now. He has also been diagnosed with ASD. He is 2 years behind >> in school but he is mainstreamed and did very well this year! >> >> We had genetic testing (I believe it was an analysis and possibly a FISH >> test?) done when he was about 2 or 3- can't remember for sure now) and it >> did not show any abnormalities despite his oddities. I have read that a >> blood test is not always reliable in detecting MDS and that is why I'm here. >> I want more information on it and to hear other people's stories before I >> put him through any more tests. Normally, I wouldn't worry about having a >> name for the condition but I know that people with DS can have subsequent >> health problems so I'm giving it consideration. >> >> Here is a little more info about . He is microcephalic with a flat >> back to his head, his eyes are wide set, his philtrum (area between the nose >> and mouth) is long, ears are a bit low, fingers are a bit short... I'll post >> a picture when I'm done here. He has many findings that are consistant with >> some sort of genetic something but it has not yet been discovered. >> >> Did any of you have a normal chromosome analysis before your child was >> DX'd with MDS? >> >> Thanks for any and all information! >> >> >> >> >> >> > >> > Hi Everyone >> > We have a new family joining us today! Here is what they had to say.... >> > >> > Hello! I am a mother to a wonderful son who has had many medical >> difficulties and it was mentioned to me that he may have MDS the other day >> so I'm looking for more information. >> > Thanks! >> > >> > Welcome to our family! I am so glad you have joined us! Please tell us >> all about you and your son. How old is he? Did the doctor suggest he has >> mDs? Please feel free to ask any questions you have and we will be happy to >> share our experiences. >> > >> > Kristy Colvin >> > IMDSA President >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ >> > International Mosaic Down Syndrome Association >> > PH: >> > Toll Free: 1-888-MDS-LINK >> > http://www.imdsa.org >> > http://www.mosaicmoments.today.com >> > SAVE THE DATE! JULY 10-12 Cincinnati, Ohio USA >> > BUILDING BRIDGES FOR DOWN SYNDROME >> > RESEARCH & AWARENESS CONFERENCE >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2009 Report Share Posted December 3, 2009 Welcome to the family. Subject: Welcome new family! To: mosaicds Date: Monday, November 30, 2009, 4:25 PM  Hi Everyone, We have a new family joining us today. Here is what they had to say... Our 4 year old daughter was recently diagnosed with MDS. I am looking for other people with similar stories that I can talk to about it etc. Welcome to our family! I am so glad you have joined us! Please tell us all about your daughter. What lead you to the diagnosis? Please feel free to ask any questions you may have here. We will all be very happy to share our experiences with you. Kristy-Mom to Arron 28, 24, Tim 23 MDS, Stevan 22 and Garrett 13 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2009 Report Share Posted December 7, 2009 Hello, and welcome to our support group. This is a great place, for information - and creating great friendships. My name is Casey Morton, I also as your child I have MDS. If you have any questions for any of us, please dont hesitate to ask. Again... WELCOME!! www.imdsa.org Casey T. Morton IMDSA Newsletter Editor Subject: Welcome New Family! To: mosaicds Date: Monday, December 7, 2009, 11:17 PM  Hi Everyone We have a new family joining us today. Here is what they had to say.... My daughter, now 5 months old, was diagnosed with MDS at birth. I would like to join the parent support group for MDS. Welcome to our family! Im so glad you joined us! Please tell us all about you and your baby! Feel free to ask any questions you may have here. We will all be happy to share our experiences. Kristy Colvin IMDSA President (interim) ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa. org http://www.mosaicmo ments.today. com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Hi everyone! We have a new family joining our group today. Here is what they had to say... My son was recently born (6 days ago) with a diagnosis of DS. Welcome, and Congrats on your new baby boy! Please tell us all about you and your son. What is your name and his name? Did you know before hand that he had DS? Please feel free to ask any questions here. We will all be happy to share our experiences with you. Just know that you are not alone in this journey, we all have been there at some point. Hellard ~ Mom to Adde 3 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 Hello Debbi and Kaitee - The only social problem I have with (who has MDS) is she hugs too many people and that sometimes freaks people out (especially kids with allergies) - But I do have social issues with my son (who has Asperger's) so ask away - Darlene - Mom to (13) and (11) On Wed, May 12, 2010 at 12:35 PM, Hellard wrote: > > > Hi everyone! We have a new family joining us today! Here is what she had to > say..... > > my name is Debbi I am mom to Kaitee 13. > we are having serious social > problems and I am hoping someone out there > can help me out . > > Welcome Debbi! Please tell us what kind of social problems your having with > your daughter. I'm sure there is someone on here that has a child that is > the same age of your daughter, and maybe going though the same thing. > > My name is , and my daughter Adde is 3 and has mDs. > > Hellard > > IMDSA President > > brandy@... <brandy%40imdsa.org> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2010 Report Share Posted June 17, 2010 I posted a new message. Hopefully that was okay. I didn't see this post first. Thanks for the welcome. I hope to learn alot! Quote Link to comment Share on other sites More sharing options...
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