Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Welcome, ! We are happy to have you on board! A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Kristy Colvin Sent: Mon 7/21/2008 7:07 PM To: mosaicds Subject: Welcome ! Hi Everyone We have a new family joining us today. Here is what had to say... My son is 4 month old and has Down syndrome. He is accompplishing all his millestones as a typical kid. This is the reason his therapiest told us he may be a case of MDS. Welcome to our family ! I am so glad you joined us! Please tell us all about your son! What is his name? Where do you live? We may have families in your area I look forward to hearing more about you and your baby. Kristy Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org <http://www.imdsa.org/> http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Welcome ! What is your son's name? Tell us more about him, I am sure he is the light of your life. ;-) Darlene On Wed, Jul 23, 2008 at 4:09 PM, , - Kenton County < cynthia.jones@...> wrote: > Welcome, ! We are happy to have you on board! > > A. > Special Educator > Simon Kenton HS > 11132 Madison Pk. > Independence, KY 41051 > (859)960-0348 > cynthia.jones@... <cynthia.jones%40kenton.kyschools.us> > > ________________________________ > > From: MosaicDS <MosaicDS%40yahoogroups.com> on behalf of > Kristy Colvin > Sent: Mon 7/21/2008 7:07 PM > To: mosaicds <mosaicds%40yahoogroups.com> > Subject: Welcome ! > > Hi Everyone > We have a new family joining us today. Here is what had to say... > > My son is 4 month old and has Down syndrome. He is > accompplishing all his millestones as a typical kid. This is the reason > his therapiest told us he may be a case of MDS. > > Welcome to our family ! I am so glad you joined us! Please tell us all > about your son! What is his name? Where do you live? We may have families in > your area > > I look forward to hearing more about you and your baby. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org <http://www.imdsa.org/> > http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Everyone, My son's name is Aidan. His dad is American and I am Panamanian, therefore he is a pretty boy because of the mix of the two races, hehehehe. He was born on March 16th, 2008 at 7:22 pm after 20 hours of labor. He was a very active when he was in the womb. I used to call him my little wild bull. I was prenatally diganosed that my son had Down syndrome. I created my own strategy to fight against the syndrome while I was expecting my son. I knew this will not cure him from the syndrome, but it may help to improve his development. I started to give him prenatally stimulation; eating more healthy than ever, including a lot of antioxidants; keeping an positive actuated because I didn't want my baby to feel sadness when he wasn't born yet. My mom was my support, her positive actitude and her faith in God made me be strong for my husband and my baby. It was my first pregnancy and I didn't let the syndrome ruined. I can say I had fun expecting my baby, knowing that my OB was taking care of my pregnancy, even although it was tedious to go to her office every week for three months, including the visits to the hospitals for 5 months to monitor his development through the ulstrasounds. We feel that God has blessed us in all ways with our son because he has united people praying for him; even although they don’t know us. He was considered a very active unborn baby, when babies with Down syndrome are not active; He reached an average size at birth when the expectation is that babies with Down syndrome are under weight and tinny; all his internal body structure is normal which means he won’t have most of the sever down syndrome complications; his heart has an excellent heart rate and function, which means he won’t have an open heart surgery as many other babies with Down syndrome.Tommy has good muscles tone and excellent reflexes. We couldn’t have a better baby, because he is already perfect surpassing all the expectations of Down syndrome. Today, My son is 4 month old and he is not showing any mentally or physical delays right now. He is ahead accomplishing one of the major milestones, rolling over. We saw him trying to flip over since he was 2 weeks old. He rolled over for the first time since he was one month old. He seats with support since he was 13 weeks. He is out of the Down syndrome growth chart because according the growth chart for typical kids, he is 75 percentile. He is a big boy! He is our joy and he shows to us and the rest of the world that miracles can happen! God Bless you all, ROSA > ________________________________ >> To: MosaicDS >> From: Darleneand@... >> Date: Wed, 23 Jul 2008 16:18:22 -0400 >> Subject: Re: Welcome ! >> >> >> Welcome ! What is your son's name? Tell us more about him, I am sure >> he is the light of your life. ;-) >> >> Darlene >> >> On Wed, Jul 23, 2008 at 4:09 PM, , - Kenton County < >> cynthia.jones@...> wrote: >> >>> Welcome, ! We are happy to have you on board! >>> >>> A. >>> Special Educator >>> Simon Kenton HS >>> 11132 Madison Pk. >>> Independence, KY 41051 >>> (859)960-0348 >>> cynthia.jones@... >>> >>> ________________________________ >>> >>> From: MosaicDS on behalf of >>> Kristy Colvin >>> Sent: Mon 7/21/2008 7:07 PM >>> To: mosaicds >>> Subject: Welcome ! >>> >>> Hi Everyone >>> We have a new family joining us today. Here is what had to say... >>> >>> My son is 4 month old and has Down syndrome. He is >>> accompplishing all his millestones as a typical kid. This is the reason >>> his therapiest told us he may be a case of MDS. >>> >>> Welcome to our family ! I am so glad you joined us! Please tell us all >>> about your son! What is his name? Where do you live? We may have families in >>> your area >>> >>> I look forward to hearing more about you and your baby. >>> >>> Kristy >>> Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 >>> >>> 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 >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 - sounds wonderful and you sound like you have a positive attitude to the whole " Bad " news - It is not " Bad " just different than what you expected but you were told ahead so you did your research and knew what was coming and he is still shocking you :-) Darlene - Mom to (11) and (9) On Wed, Jul 23, 2008 at 9:15 PM, rosa maria ortiz wrote: > > Hi Everyone, > > My son's name is Aidan. His dad is American and I am Panamanian, > therefore he is a pretty boy because of the mix of the two races, hehehehe. > He was born on March 16th, 2008 at 7:22 pm after 20 hours of labor. He was a > very active when he was in the womb. I used to call him my little wild bull. > I was prenatally diganosed that my son had Down syndrome. I created my own > strategy to fight against the syndrome while I was expecting my son. I knew > this will not cure him from the syndrome, but it may help to improve his > development. I started to give him prenatally stimulation; eating more > healthy than ever, including a lot of antioxidants; keeping an positive > actuated because I didn't want my baby to feel sadness when he wasn't born > yet. My mom was my support, her positive actitude and her faith in God made > me be strong for my husband and my baby. It was my first pregnancy and I > didn't let the syndrome ruined. I can say I had fun expecting my baby, > knowing that my OB was taking care of my pregnancy, even although it was > tedious to go to her office every week for three months, including the > visits to the hospitals for 5 months to monitor his development through the > ulstrasounds. > > We feel that God has blessed us in all ways with our son because he has > united people praying for him; even although they don't know us. He was > considered a very active unborn baby, when babies with Down syndrome are not > active; He reached an average size at birth when the expectation is that > babies with Down syndrome are under weight and tinny; all his internal body > structure is normal which means he won't have most of the sever down > syndrome complications; his heart has an excellent heart rate and function, > which means he won't have an open heart surgery as many other babies with > Down syndrome.Tommy has good muscles tone and excellent reflexes. We > couldn't have a better baby, because he is already perfect surpassing all > the expectations of Down syndrome. > > Today, My son is 4 month old and he is not showing any mentally or > physical delays right now. He is ahead accomplishing one of the major > milestones, rolling over. We saw him trying to flip over since he was 2 > weeks old. He rolled over for the first time since he was one month old. He > seats with support since he was 13 weeks. He is out of the Down syndrome > growth chart because according the growth chart for typical kids, he is 75 > percentile. He is a big boy! He is our joy and he shows to us and the rest > of the world that miracles can happen! > > > God Bless you all, > > ROSA > > > ________________________________ > >> To: MosaicDS > >> From: Darleneand@... > >> Date: Wed, 23 Jul 2008 16:18:22 -0400 > >> Subject: Re: Welcome ! > >> > >> > >> Welcome ! What is your son's name? Tell us more about him, I am sure > >> he is the light of your life. ;-) > >> > >> Darlene > >> > >> On Wed, Jul 23, 2008 at 4:09 PM, , - Kenton County < > >> cynthia.jones@...> wrote: > >> > >>> Welcome, ! We are happy to have you on board! > >>> > >>> A. > >>> Special Educator > >>> Simon Kenton HS > >>> 11132 Madison Pk. > >>> Independence, KY 41051 > >>> (859)960-0348 > >>> cynthia.jones@... > >>> > >>> ________________________________ > >>> > >>> From: MosaicDS on behalf of > >>> Kristy Colvin > >>> Sent: Mon 7/21/2008 7:07 PM > >>> To: mosaicds > >>> Subject: Welcome ! > >>> > >>> Hi Everyone > >>> We have a new family joining us today. Here is what had to say... > >>> > >>> My son is 4 month old and has Down syndrome. He is > >>> accompplishing all his millestones as a typical kid. This is the reason > >>> his therapiest told us he may be a case of MDS. > >>> > >>> Welcome to our family ! I am so glad you joined us! Please tell us > all > >>> about your son! What is his name? Where do you live? We may have > families in > >>> your area > >>> > >>> I look forward to hearing more about you and your baby. > >>> > >>> Kristy > >>> Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > >>> > >>> 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 > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Welcome . I think you will fit right in with this crowd, as a lot of us were confused, just like you, before we got rediagnosed. > > Hi Everyone! > We have a new family joining us today! Here is what had to say... > > My 5month old son was diagnosed with DS, but doesnt seem to fit the mold. He doesnt look like he has Down syndrome and he is very strong. He is also on schedule for development at his age. We are just confused. > > Welcome to our family ! I am so glad you have joined us! Please tell everyone all about your little boy! (I don't think you ever told me his name!) Please feel free to ask any questions you have here! We will all be very happy to share our experiences! > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hi Everyone We have a new family joining us today. Please help me welcome into our family. Here is what she had to say... Hi-My name is . I have 7 children (4 boys and 3 girls). My last child has had some feeding issues and developmental delays from the beginning. It just occured to me that these things could be related so I took him to the family dr. He is referring him to a pediatrician for further evaluation. I have been researching and really think that he may have MDS. I hope to gain valuable information from your group to help me to help my precious son. Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? Please feel free to ask any questions you have here. We will all be happy to share our experiences. Kristy Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Thankyou for the welcome. A little bit of history...My last pregnancy before this child ended at 18 weeks. The baby had several things wrong with her. It was either Trisomy 18 or 's. We never found out for sure. When was born last October, I could not get him to nurse in the hospital. He would turn away like he didn't even want to try. I have nursed all of my children for one year, so I felt like he should catch on pretty quick..BUT he didn't. I cried over and over and the drs thought if I got home in my own environment, things would go more smoothly. He was loosing weight, but I was not going to give in and give him the bottle. So, After a few weeks, he caught on. Other things I noticed different (compared to my other children) from the beginning. When I would go to pick him off the changing table, he was kind of floppy. I just compensated and would push in around his chest to lift him instead of directly under his arms. My mom told me she thought it was strange that he didn't look at our hairlines like most babies, but he looked beyond our faces into the ceiling. Anyway...around 4 months old, I tried to introduce him to juice. He didn't want anything to do with it. 5 months old-he rolled over from front to back a few times(I figured he was on track because of this). He never would roll from his back to front. Ard 6 months, I tried baby food and he would have nothing to do with it. so I waited and tried over and over again. Finally, ard 7 months, he started eating baby food. I was talking to a friend about a month ago and her baby was younger than mine and was eating cheerios! I thought then that he was definitely behind. Anytime I give him a piece of rice or anything small, he would gag and spit up all (usually 2 jars) of baby food.He sat up really late compared to average children. He still wasn't crawling at 9 months, so I started thinking maybe all of these things were related. I made an appt with the dr and right before we went it at 10 months, he started rolling from his back to front and crawling! I went ahead and took him. He said that he had the 'whatever' fold in his eye, but he didn't have a crease in his hands. He said that the pediatrician would know more about syndromes and could make a better diagnosis if he indeed had something going on. So, when I came home, I started researching and it seems that he may have MDS I am waiting for the Dr to call me back for an appt and I am going nuts! I have cried a little, because I don't want anything to be wrong. I can handle having a special needs child, I just don't want him to have health issues. He is the sweetest, happiest baby (he wasn't the first few months) and we all love him dearly. HE is spoiled rotten! Other things that I can look back and wonder about... When he was born, his neck was thick with extra skin. Both me and my husband noticed it, but it disappeared in few weeks or so. He wiggles his hands (like crazy) if he is sitting still (kinda strange) He had hiccups all the time! I asked the dr if it could be reflux and he said no. He had them all day and night. Well, anyway, any advice that you might have would be welcome-advice for me or questions I might ask the dr. Thanks so much- > > Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? > Please feel free to ask any questions you have here. We will all be happy to share our experiences. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 My son is 6 months old and was diagnosed a day after his birth and he has excellent muscle tone and no hand crease either the eyes are a little downs looking sometimes. It really kinda surprises me that your pediatrician and the hospitol didnt pick up on this sooner. So far we are pretty much on target for developmental milestones. We may be on the later end for some of them but we still hit them. I wish you the very best of luck and as we have found out either MDS or DS has so many varing degrees it can be hard to notice them at times. Just with the list of symptoms you have given it does sound like you might be on to something yourself. Get the bloodwork! Subject: Re: Welcome ! To: MosaicDS Date: Tuesday, September 2, 2008, 4:07 PM Thankyou for the welcome. A little bit of history...My last pregnancy before this child ended at 18 weeks. The baby had several things wrong with her. It was either Trisomy 18 or 's. We never found out for sure. When was born last October, I could not get him to nurse in the hospital. He would turn away like he didn't even want to try. I have nursed all of my children for one year, so I felt like he should catch on pretty quick..BUT he didn't. I cried over and over and the drs thought if I got home in my own environment, things would go more smoothly. He was loosing weight, but I was not going to give in and give him the bottle. So, After a few weeks, he caught on. Other things I noticed different (compared to my other children) from the beginning. When I would go to pick him off the changing table, he was kind of floppy. I just compensated and would push in around his chest to lift him instead of directly under his arms. My mom told me she thought it was strange that he didn't look at our hairlines like most babies, but he looked beyond our faces into the ceiling. Anyway...around 4 months old, I tried to introduce him to juice. He didn't want anything to do with it. 5 months old-he rolled over from front to back a few times(I figured he was on track because of this). He never would roll from his back to front. Ard 6 months, I tried baby food and he would have nothing to do with it. so I waited and tried over and over again. Finally, ard 7 months, he started eating baby food. I was talking to a friend about a month ago and her baby was younger than mine and was eating cheerios! I thought then that he was definitely behind. Anytime I give him a piece of rice or anything small, he would gag and spit up all (usually 2 jars) of baby food.He sat up really late compared to average children. He still wasn't crawling at 9 months, so I started thinking maybe all of these things were related. I made an appt with the dr and right before we went it at 10 months, he started rolling from his back to front and crawling! I went ahead and took him. He said that he had the 'whatever' fold in his eye, but he didn't have a crease in his hands. He said that the pediatrician would know more about syndromes and could make a better diagnosis if he indeed had something going on. So, when I came home, I started researching and it seems that he may have MDS I am waiting for the Dr to call me back for an appt and I am going nuts! I have cried a little, because I don't want anything to be wrong. I can handle having a special needs child, I just don't want him to have health issues. He is the sweetest, happiest baby (he wasn't the first few months) and we all love him dearly. HE is spoiled rotten! Other things that I can look back and wonder about... When he was born, his neck was thick with extra skin. Both me and my husband noticed it, but it disappeared in few weeks or so. He wiggles his hands (like crazy) if he is sitting still (kinda strange) He had hiccups all the time! I asked the dr if it could be reflux and he said no. He had them all day and night. Well, anyway, any advice that you might have would be welcome-advice for me or questions I might ask the dr. Thanks so much- > > Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? > Please feel free to ask any questions you have here. We will all be happy to share our experiences. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Does the dr do the bloodwork or would I have to go to a specialist? Thanks- Jenni Re: Welcome ! To: MosaicDS Date: Tuesday, September 2, 2008, 4:07 PM Thankyou for the welcome. A little bit of history...My last pregnancy before this child ended at 18 weeks. The baby had several things wrong with her. It was either Trisomy 18 or 's. We never found out for sure. When was born last October, I could not get him to nurse in the hospital. He would turn away like he didn't even want to try. I have nursed all of my children for one year, so I felt like he should catch on pretty quick..BUT he didn't. I cried over and over and the drs thought if I got home in my own environment, things would go more smoothly. He was loosing weight, but I was not going to give in and give him the bottle. So, After a few weeks, he caught on. Other things I noticed different (compared to my other children) from the beginning. When I would go to pick him off the changing table, he was kind of floppy. I just compensated and would push in around his chest to lift him instead of directly under his arms. My mom told me she thought it was strange that he didn't look at our hairlines like most babies, but he looked beyond our faces into the ceiling. Anyway...around 4 months old, I tried to introduce him to juice. He didn't want anything to do with it. 5 months old-he rolled over from front to back a few times(I figured he was on track because of this). He never would roll from his back to front. Ard 6 months, I tried baby food and he would have nothing to do with it. so I waited and tried over and over again. Finally, ard 7 months, he started eating baby food. I was talking to a friend about a month ago and her baby was younger than mine and was eating cheerios! I thought then that he was definitely behind. Anytime I give him a piece of rice or anything small, he would gag and spit up all (usually 2 jars) of baby food.He sat up really late compared to average children. He still wasn't crawling at 9 months, so I started thinking maybe all of these things were related. I made an appt with the dr and right before we went it at 10 months, he started rolling from his back to front and crawling! I went ahead and took him. He said that he had the 'whatever' fold in his eye, but he didn't have a crease in his hands. He said that the pediatrician would know more about syndromes and could make a better diagnosis if he indeed had something going on. So, when I came home, I started researching and it seems that he may have MDS I am waiting for the Dr to call me back for an appt and I am going nuts! I have cried a little, because I don't want anything to be wrong. I can handle having a special needs child, I just don't want him to have health issues. He is the sweetest, happiest baby (he wasn't the first few months) and we all love him dearly. HE is spoiled rotten! Other things that I can look back and wonder about... When he was born, his neck was thick with extra skin. Both me and my husband noticed it, but it disappeared in few weeks or so. He wiggles his hands (like crazy) if he is sitting still (kinda strange) He had hiccups all the time! I asked the dr if it could be reflux and he said no. He had them all day and night. Well, anyway, any advice that you might have would be welcome-advice for me or questions I might ask the dr. Thanks so much- > > Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? > Please feel free to ask any questions you have here. We will all be happy to share our experiences. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Welcome . I am happy you have found our group. My name is Donna and I am grandma to Adam who is 6 and has mds. You have come to the right place to get answers to your questions so Ask Away. Donna - gram to Adam (6)mds, Skylar (6) and Mia (22 mo.) Subject: Welcome ! To: mosaicds Date: Tuesday, September 2, 2008, 3:53 PM Hi Everyone We have a new family joining us today. Please help me welcome into our family. Here is what she had to say... Hi-My name is . I have 7 children (4 boys and 3 girls). My last child has had some feeding issues and developmental delays from the beginning. It just occured to me that these things could be related so I took him to the family dr. He is referring him to a pediatrician for further evaluation. I have been researching and really think that he may have MDS. I hope to gain valuable information from your group to help me to help my precious son. Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? Please feel free to ask any questions you have here. We will all be happy to share our experiences. Kristy Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 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 September 3, 2008 Report Share Posted September 3, 2008 The pediatrican orders the bloodwork and you usually have to go to whichever lab they use to draw the blood work. Depends on your dr some have people inhouse that can draw the blood. You shouldnt need to go to a specialist in the beginning. You just need to get an idea of what may be going on. However if your pediatrician knows nothing about MDS or DS then he may refer you to someone else because he may not know what test to order, but it really is a simple test to order in the beginning. From: mom26wife21 <r9thomasbellsouth (DOT) net> Subject: Re: Welcome ! To: MosaicDS@yahoogroup s.com Date: Tuesday, September 2, 2008, 4:07 PM Thankyou for the welcome. A little bit of history...My last pregnancy before this child ended at 18 weeks. The baby had several things wrong with her. It was either Trisomy 18 or 's. We never found out for sure. When was born last October, I could not get him to nurse in the hospital. He would turn away like he didn't even want to try. I have nursed all of my children for one year, so I felt like he should catch on pretty quick..BUT he didn't. I cried over and over and the drs thought if I got home in my own environment, things would go more smoothly. He was loosing weight, but I was not going to give in and give him the bottle. So, After a few weeks, he caught on. Other things I noticed different (compared to my other children) from the beginning. When I would go to pick him off the changing table, he was kind of floppy. I just compensated and would push in around his chest to lift him instead of directly under his arms. My mom told me she thought it was strange that he didn't look at our hairlines like most babies, but he looked beyond our faces into the ceiling. Anyway...around 4 months old, I tried to introduce him to juice. He didn't want anything to do with it. 5 months old-he rolled over from front to back a few times(I figured he was on track because of this). He never would roll from his back to front. Ard 6 months, I tried baby food and he would have nothing to do with it. so I waited and tried over and over again. Finally, ard 7 months, he started eating baby food. I was talking to a friend about a month ago and her baby was younger than mine and was eating cheerios! I thought then that he was definitely behind. Anytime I give him a piece of rice or anything small, he would gag and spit up all (usually 2 jars) of baby food.He sat up really late compared to average children. He still wasn't crawling at 9 months, so I started thinking maybe all of these things were related. I made an appt with the dr and right before we went it at 10 months, he started rolling from his back to front and crawling! I went ahead and took him. He said that he had the 'whatever' fold in his eye, but he didn't have a crease in his hands. He said that the pediatrician would know more about syndromes and could make a better diagnosis if he indeed had something going on. So, when I came home, I started researching and it seems that he may have MDS I am waiting for the Dr to call me back for an appt and I am going nuts! I have cried a little, because I don't want anything to be wrong. I can handle having a special needs child, I just don't want him to have health issues. He is the sweetest, happiest baby (he wasn't the first few months) and we all love him dearly. HE is spoiled rotten! Other things that I can look back and wonder about... When he was born, his neck was thick with extra skin. Both me and my husband noticed it, but it disappeared in few weeks or so. He wiggles his hands (like crazy) if he is sitting still (kinda strange) He had hiccups all the time! I asked the dr if it could be reflux and he said no. He had them all day and night. Well, anyway, any advice that you might have would be welcome-advice for me or questions I might ask the dr. Thanks so much- > > Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? > Please feel free to ask any questions you have here. We will all be happy to share our experiences. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Welcome, ! This group is full of " seasoned veterans " in the Mom department, so I'm sure you'll find LOTS of answers here! It sounds like you are a seasoned veteran yourself, but it's always good to be able to get advice from someone who's " been there; done that " and these folks have. A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Kristy Colvin Sent: Tue 9/2/2008 3:53 PM To: mosaicds Subject: Welcome ! Hi Everyone We have a new family joining us today. Please help me welcome into our family. Here is what she had to say... Hi-My name is . I have 7 children (4 boys and 3 girls). My last child has had some feeding issues and developmental delays from the beginning. It just occured to me that these things could be related so I took him to the family dr. He is referring him to a pediatrician for further evaluation. I have been researching and really think that he may have MDS. I hope to gain valuable information from your group to help me to help my precious son. Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? Please feel free to ask any questions you have here. We will all be happy to share our experiences. Kristy Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org <http://www.imdsa.org/> http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 hi there jennifer welcome!! my son sam was not diagnosed until he was 7. doctors and teachers all said he was fine just a little behind and then he went into first grade. his teacher that year encouraged me to look into having him checked out. it took two different doctors to finally get the referral to go to the children's hospital. the doctor there thought maybe downs and did a blood test which turned out to be negative. then they did a skin test (a punch of skin off his arm) and it showed that he has mds. my point (sorry, long story) is to pursue if you are not satisfied. i wish i would have sooner when i had those gut feelings when he was a baby. i am glad the doctors at the children's hospital did more than the first test because i would have stopped looking there. hope this helps. push the doctors if you need to ---gina mom of sam 9 mds, mitch 10, and kate 7 From: mom26wife21 <r9thomas@bellsouth . net> Subject: Re: Welcome ! To: MosaicDS@yahoogroup s.com Date: Tuesday, September 2, 2008, 4:07 PM Thankyou for the welcome. A little bit of history...My last pregnancy before this child ended at 18 weeks. The baby had several things wrong with her. It was either Trisomy 18 or 's. We never found out for sure. When was born last October, I could not get him to nurse in the hospital. He would turn away like he didn't even want to try. I have nursed all of my children for one year, so I felt like he should catch on pretty quick..BUT he didn't. I cried over and over and the drs thought if I got home in my own environment, things would go more smoothly. He was loosing weight, but I was not going to give in and give him the bottle. So, After a few weeks, he caught on. Other things I noticed different (compared to my other children) from the beginning. When I would go to pick him off the changing table, he was kind of floppy. I just compensated and would push in around his chest to lift him instead of directly under his arms. My mom told me she thought it was strange that he didn't look at our hairlines like most babies, but he looked beyond our faces into the ceiling. Anyway...around 4 months old, I tried to introduce him to juice. He didn't want anything to do with it. 5 months old-he rolled over from front to back a few times(I figured he was on track because of this). He never would roll from his back to front. Ard 6 months, I tried baby food and he would have nothing to do with it. so I waited and tried over and over again. Finally, ard 7 months, he started eating baby food. I was talking to a friend about a month ago and her baby was younger than mine and was eating cheerios! I thought then that he was definitely behind. Anytime I give him a piece of rice or anything small, he would gag and spit up all (usually 2 jars) of baby food.He sat up really late compared to average children. He still wasn't crawling at 9 months, so I started thinking maybe all of these things were related. I made an appt with the dr and right before we went it at 10 months, he started rolling from his back to front and crawling! I went ahead and took him. He said that he had the 'whatever' fold in his eye, but he didn't have a crease in his hands. He said that the pediatrician would know more about syndromes and could make a better diagnosis if he indeed had something going on. So, when I came home, I started researching and it seems that he may have MDS I am waiting for the Dr to call me back for an appt and I am going nuts! I have cried a little, because I don't want anything to be wrong. I can handle having a special needs child, I just don't want him to have health issues. He is the sweetest, happiest baby (he wasn't the first few months) and we all love him dearly. HE is spoiled rotten! Other things that I can look back and wonder about... When he was born, his neck was thick with extra skin. Both me and my husband noticed it, but it disappeared in few weeks or so. He wiggles his hands (like crazy) if he is sitting still (kinda strange) He had hiccups all the time! I asked the dr if it could be reflux and he said no. He had them all day and night. Well, anyway, any advice that you might have would be welcome-advice for me or questions I might ask the dr. Thanks so much- > > Welcome to our family . I am so glad you have joined us. Please tell us more about your son. What other things (if any) lead you to think he has MDS? > Please feel free to ask any questions you have here. We will all be happy to share our experiences. > > Kristy > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Hello - My daughter (9) was 8 years old when they discovered her silent PDA. This was after she told me her heart hurt so I took her to a cardiologist and had her checked out - she has been hospitalized 3 times before this and no one had ever mentioned her heart. By doing an echo cardiogram they found the silent PDA and it was fixed a few months after her 9th birthday. I am just thankful I took her in and had her checked out - the cardiologist said the silent PDA does not cause any pain, so it was most likely heart burn that she was complaining about - but SHE DID HAVE A HOLE IN HER HEART! If she complains, I have it checked out. She does not complain often, she was uncomfortable from the day I started her on solid food until age 3 when she had surgery to unblock her small intestine so I listen to her. Darlene - mom to (11) and (9) > hi there jennifer welcome!! > my son sam was not diagnosed until he was 7. doctors and teachers all said > he was fine just a little behind and then he went into first grade. his > teacher that year encouraged me to look into having him checked out. it > took two different doctors to finally get the referral to go to the > children's hospital. the doctor there thought maybe downs and did a blood > test which turned out to be negative. then they did a skin test (a punch > of skin off his arm) and it showed that he has mds. my point (sorry, long > story) is to pursue if you are not satisfied. i wish i would have sooner > when i had those gut feelings when he was a baby. i am glad the doctors at > the children's hospital did more than the first test because i would have > stopped looking there. hope this helps. push the doctors if you need to > ---gina mom of sam 9 mds, mitch 10, and kate 7 > > > > From: mom26wife21 <r9thomas@bellsouth . net> > Subject: Re: Welcome ! > To: MosaicDS@yahoogroup s.com > Date: Tuesday, September 2, 2008, 4:07 PM > > Thankyou for the welcome. A little bit of history...My last > pregnancy > before this child ended at 18 weeks. The baby had several things > wrong > with her. It was either Trisomy 18 or 's. We never found out > for > sure. > > When was born last October, I could not get him to nurse in > the hospital. He would turn away like he didn't even want to try. I > have nursed all of my children for one year, so I felt like he > should > catch on pretty quick..BUT he didn't. I cried over and over and the > drs thought if I got home in my own environment, things would go > more > smoothly. He was loosing weight, but I was not going to give in and > give him the bottle. So, After a few weeks, he caught on. > > Other things I noticed different (compared to my other children) > from > the beginning. When I would go to pick him off the changing table, > he > was kind of floppy. I just compensated and would push in around his > chest to lift him instead of directly under his arms. My mom told me > she thought it was strange that he didn't look at our hairlines like > most babies, but he looked beyond our faces into the ceiling. > > Anyway...around 4 months old, I tried to introduce him to juice. He > didn't want anything to do with it. 5 months old-he rolled over from > front to back a few times(I figured he was on track because of > this). > He never would roll from his back to front. Ard 6 months, I tried > baby > food and he would have nothing to do with it. so I waited and tried > over and over again. Finally, ard 7 months, he started eating baby > food. I was talking to a friend about a month ago and her baby was > younger than mine and was eating cheerios! I thought then that he > was > definitely behind. Anytime I give him a piece of rice or anything > small, he would gag and spit up all (usually 2 jars) of baby food.He > sat up really late compared to average children. He still wasn't > crawling at 9 months, so I started thinking maybe all of these > things > were related. I made an appt with the dr and right before we went it > at 10 months, he started rolling from his back to front and > crawling! > I went ahead and took him. > > He said that he had the 'whatever' fold in his eye, but he didn't > have > a crease in his hands. He said that the pediatrician would know more > about syndromes and could make a better diagnosis if he indeed had > something going on. So, when I came home, I started researching and > it > seems that he may have MDS I am waiting for the Dr to call me back > for > an appt and I am going nuts! I have cried a little, because I don't > want anything to be wrong. I can handle having a special needs > child, > I just don't want him to have health issues. He is the sweetest, > happiest baby (he wasn't the first few months) and we all love him > dearly. HE is spoiled rotten! > > Other things that I can look back and wonder about... > When he was born, his neck was thick with extra skin. Both me and my > husband noticed it, but it disappeared in few weeks or so. > > He wiggles his hands (like crazy) if he is sitting still (kinda > strange) > He had hiccups all the time! I asked the dr if it could be reflux > and > he said no. He had them all day and night. > > Well, anyway, any advice that you might have would be welcome-advice > for me or questions I might ask the dr. > Thanks so much- > > > > > > Welcome to our family . I am so glad you have joined us. > Please tell us more about your son. What other things (if any) lead > you to think he has MDS? > > Please feel free to ask any questions you have here. We will all > be happy to share our experiences. > > > > Kristy > > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 , I read further down into your story on this post. I wanted to have the skin test and the geneticist thought it was unneccesary. Just curious if you know how many blood cells were tested? We had 500 each (except Simeon had 2000) blood cells tested. No skin was ever done. He said buccal was not the same as the punch test. > > From: mom26wife21 <r9thomas@bellsouth . net> > Subject: Re: Welcome ! > To: MosaicDS@yahoogroup s.com > Date: Tuesday, September 2, 2008, 4:07 PM > > Thankyou for the welcome. A little bit of history...My last > pregnancy > before this child ended at 18 weeks. The baby had several things > wrong > with her. It was either Trisomy 18 or 's. We never found out > for > sure. > > When was born last October, I could not get him to nurse in > the hospital. He would turn away like he didn't even want to try. I > have nursed all of my children for one year, so I felt like he > should > catch on pretty quick..BUT he didn't. I cried over and over and the > drs thought if I got home in my own environment, things would go > more > smoothly. He was loosing weight, but I was not going to give in and > give him the bottle. So, After a few weeks, he caught on. > > Other things I noticed different (compared to my other children) > from > the beginning. When I would go to pick him off the changing table, > he > was kind of floppy. I just compensated and would push in around his > chest to lift him instead of directly under his arms. My mom told me > she thought it was strange that he didn't look at our hairlines like > most babies, but he looked beyond our faces into the ceiling. > > Anyway...around 4 months old, I tried to introduce him to juice. He > didn't want anything to do with it. 5 months old-he rolled over from > front to back a few times(I figured he was on track because of > this). > He never would roll from his back to front. Ard 6 months, I tried > baby > food and he would have nothing to do with it. so I waited and tried > over and over again. Finally, ard 7 months, he started eating baby > food. I was talking to a friend about a month ago and her baby was > younger than mine and was eating cheerios! I thought then that he > was > definitely behind. Anytime I give him a piece of rice or anything > small, he would gag and spit up all (usually 2 jars) of baby food.He > sat up really late compared to average children. He still wasn't > crawling at 9 months, so I started thinking maybe all of these > things > were related. I made an appt with the dr and right before we went it > at 10 months, he started rolling from his back to front and > crawling! > I went ahead and took him. > > He said that he had the 'whatever' fold in his eye, but he didn't > have > a crease in his hands. He said that the pediatrician would know more > about syndromes and could make a better diagnosis if he indeed had > something going on. So, when I came home, I started researching and > it > seems that he may have MDS I am waiting for the Dr to call me back > for > an appt and I am going nuts! I have cried a little, because I don't > want anything to be wrong. I can handle having a special needs > child, > I just don't want him to have health issues. He is the sweetest, > happiest baby (he wasn't the first few months) and we all love him > dearly. HE is spoiled rotten! > > Other things that I can look back and wonder about... > When he was born, his neck was thick with extra skin. Both me and my > husband noticed it, but it disappeared in few weeks or so. > > He wiggles his hands (like crazy) if he is sitting still (kinda > strange) > He had hiccups all the time! I asked the dr if it could be reflux > and > he said no. He had them all day and night. > > Well, anyway, any advice that you might have would be welcome- advice > for me or questions I might ask the dr. > Thanks so much- > > > > > > Welcome to our family . I am so glad you have joined us. > Please tell us more about your son. What other things (if any) lead > you to think he has MDS? > > Please feel free to ask any questions you have here. We will all > be happy to share our experiences. > > > > Kristy > > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 - Not saying this is what 's issue with food is - but had a Duodenal webbing across the top of her small intestine - which let liquids through and small baby food - but when I started feeding her solid foods she would vomit (usually in the middle of the night) every 3 weeks - all over her room. We did not fix this until she was 3 because the Doctor's did not want to do an upper GI - saying it would make her uncomfortable. Well if you had 3 weeks of food sitting in your belly - you'd be uncomfortable too. Well - long story short I only convinced them after writing down everything we ate and when she got sick - looking at the undigested food and there was green beans there and we had not had green beans in 3 weeks. Darlene - Mom to (9) and (11) > , > I read further down into your story on this post. > I wanted to have the skin test and the geneticist thought it was > unneccesary. Just curious if you know how many blood cells were > tested? We had 500 each (except Simeon had 2000) blood cells tested. > No skin was ever done. He said buccal was not the same as the punch > test. > > > > > > From: mom26wife21 <r9thomas@bellsouth . net> > > Subject: Re: Welcome ! > > To: MosaicDS@yahoogroup s.com > > Date: Tuesday, September 2, 2008, 4:07 PM > > > > Thankyou for the welcome. A little bit of history...My last > > pregnancy > > before this child ended at 18 weeks. The baby had several things > > wrong > > with her. It was either Trisomy 18 or 's. We never found out > > for > > sure. > > > > When was born last October, I could not get him to nurse > in > > the hospital. He would turn away like he didn't even want to try. I > > have nursed all of my children for one year, so I felt like he > > should > > catch on pretty quick..BUT he didn't. I cried over and over and the > > drs thought if I got home in my own environment, things would go > > more > > smoothly. He was loosing weight, but I was not going to give in and > > give him the bottle. So, After a few weeks, he caught on. > > > > Other things I noticed different (compared to my other children) > > from > > the beginning. When I would go to pick him off the changing table, > > he > > was kind of floppy. I just compensated and would push in around his > > chest to lift him instead of directly under his arms. My mom told > me > > she thought it was strange that he didn't look at our hairlines > like > > most babies, but he looked beyond our faces into the ceiling. > > > > Anyway...around 4 months old, I tried to introduce him to juice. He > > didn't want anything to do with it. 5 months old-he rolled over > from > > front to back a few times(I figured he was on track because of > > this). > > He never would roll from his back to front. Ard 6 months, I tried > > baby > > food and he would have nothing to do with it. so I waited and tried > > over and over again. Finally, ard 7 months, he started eating baby > > food. I was talking to a friend about a month ago and her baby was > > younger than mine and was eating cheerios! I thought then that he > > was > > definitely behind. Anytime I give him a piece of rice or anything > > small, he would gag and spit up all (usually 2 jars) of baby > food.He > > sat up really late compared to average children. He still wasn't > > crawling at 9 months, so I started thinking maybe all of these > > things > > were related. I made an appt with the dr and right before we went > it > > at 10 months, he started rolling from his back to front and > > crawling! > > I went ahead and took him. > > > > He said that he had the 'whatever' fold in his eye, but he didn't > > have > > a crease in his hands. He said that the pediatrician would know > more > > about syndromes and could make a better diagnosis if he indeed had > > something going on. So, when I came home, I started researching and > > it > > seems that he may have MDS I am waiting for the Dr to call me back > > for > > an appt and I am going nuts! I have cried a little, because I don't > > want anything to be wrong. I can handle having a special needs > > child, > > I just don't want him to have health issues. He is the sweetest, > > happiest baby (he wasn't the first few months) and we all love him > > dearly. HE is spoiled rotten! > > > > Other things that I can look back and wonder about... > > When he was born, his neck was thick with extra skin. Both me and > my > > husband noticed it, but it disappeared in few weeks or so. > > > > He wiggles his hands (like crazy) if he is sitting still (kinda > > strange) > > He had hiccups all the time! I asked the dr if it could be reflux > > and > > he said no. He had them all day and night. > > > > Well, anyway, any advice that you might have would be welcome- > advice > > for me or questions I might ask the dr. > > Thanks so much- > > > > > > > > > > Welcome to our family . I am so glad you have joined us. > > Please tell us more about your son. What other things (if any) lead > > you to think he has MDS? > > > Please feel free to ask any questions you have here. We will all > > be happy to share our experiences. > > > > > > Kristy > > > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 I would most certainly ask to see a specialist. My daughter was diagnosed with mds and triple x almost a year ago. The genetic specialist was so shocked she ran a more invasive test by taking cells from the inside of my daughter mouth. We were at the Down syndrome clinic when a nurse there pulled up the results from this test. She actually did NOT know how to read them. She told me that my daughter had 66% mds. A few other things happened that did not sit well with me. I decided to run over the the genetic office even though I did not have an appointment. The doctor came out and took me right in. She read the results and it was Isabella had 33% cells that had mds not 66%. That test had over 900 cells tested. I am telling you this because I want to stress the importance of having someone compitant read the results. One would think that a nurse in a down syndrome clinic would be able to read results but obviously she was not. Good Luck. Sue Isabella 21 months mds Subject: Re: Welcome ! To: MosaicDS Date: Friday, September 26, 2008, 3:03 PM And also, they are required bylaw to hang on to that blood for three years (at least in the USA they are) > > Hi- > > The Dr just called and said that the tests came back 'normal'. I asked the > > nurse how many cells were tested. She said they analyzed 22 and karyotyped > > 5. Was all of this a waste of time? Do I need to push for more to be tested > > and ask to be referred to a geneticist? I am confused. > > Thanks- > > (mom to -11 months) > > > > Quote Link to comment Share on other sites More sharing options...
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