Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Hello to the new family! My name is Casey Morton, and welcome to our support group. There are a lot of parents and people here, please dont hesitate to ask any of us about mosaic Down syndrome, and or Down syndrome. We all can relate in someway, and are all here to help, I myself have Mosaic Downs, so welcome!! Casey T. Morton IMDSA NewsLetter Editor Subject: welcome new family! To: " imdsa " <mosaicds > Date: Monday, January 4, 2010, 5:15 PM  Hi everyone! We have a new family joining us today! Here is what she had to say... I Suspect my 6 month old daughter has MDS. She many features of DS, except her muscle tone is excellent. I am SO confused and looking for more info.Thank you Welcome to the group! What is your, and your daughter's name? When they tested her cells how many did they test, and what were the results? Sometimes they only test 20 cells. Please feel free to ask any questions that you may have. Hopefully someone can answer some of your questions that you may have? I'm sure that you will find this group very helpful, and supportive! Hellard ~ mom to Adde almost 3! brandyimdsa (DOT) org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hello, Oana is my daughter. Is 30 years. Is MDS. Open heart surgery was the hardest. Hope is in the future. Please See This Video Floreta > > Hi everyone! We have a new family joining us today. Her is what she had to say... > > My daughter was diagnosed with MDS at birth in 2003. She met every > milestone. > We started seeing slight problems in Kindergarten. We don't > know enough > about what to expect from MDS in the coming years. > > Welcome to our group! Please tell us more about you and your daughter. What are your names? What are the slight problems that she is having? Does the school know that she has mDs? Did she ever received services like..OT, PT, or speech? > > Just know that you are not alone, there are a lot of great people on this e-group that will be here to give you great advice, and support. > > Hellard > > IMDSA President > > brandy@... > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > 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 April 18, 2010 Report Share Posted April 18, 2010 Hello group- Our names are Mitch and Missy and our daughter is Lainy. She is 7 years old and in 1st grade. She was diagnosed with Mosaic Trisomy 21 at birth with a kareotype test and showed 1-2% of her cells with Trisomy. She is having some challenges in school with reading and has been since Kindergarten. The consistent feedback that we have received from her teachers is that she is easily distracted, has trouble focusing and doesn't finish her work in class. Further, conversations with her tend to be one way, e.g., she'll make a statement and then check out of the conversation after that. We have been to get her evaluated in her pre school hears for speech, etc and they had felt she wasn't showing a big enough deficit to warrant state funded help at the time. The school doesn't officially know about her diagnosis but we've recently mentioned it to her teacher. It has since been suggested that we get it on record so that she can get the help she needs. We are completely in the dark about what to expect next. The Drs have always told us that she may be met with challenges in school and we're seeing that now. Just don't know where the road leads after this. Anyone in a similar situation as us? -Thanks! M & M > Hi everyone! We have a new family joining us today. Her is what she > had to say... > > My daughter was diagnosed with MDS at birth in 2003. She met every > milestone. > We started seeing slight problems in Kindergarten. We don't > know enough > about what to expect from MDS in the coming years. > > Welcome to our group! Please tell us more about you and your > daughter. What are your names? What are the slight problems that she > is having? Does the school know that she has mDs? Did she ever > received services like..OT, PT, or speech? > > Just know that you are not alone, there are a lot of great people on > this e-group that will be here to give you great advice, and support. > > Hellard > > IMDSA President > > brandy@... > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > 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 August 17, 2010 Report Share Posted August 17, 2010 Thanks for welcoming us. My name is Judy, husband is Grantland and my daughter's name is Grace. We live in Connecticut. Grace was diagnosed at 18 months. We consider her very high functioning but there are some areas of concern. She loves to dance, writes imaginative stories, is a great reader however inferencing and complex subjects are struggles for her. She has difficulty connecting with others her age and prefers to play with younger kids. Last year we switched school because of teasing. She is doing much better in the larger school with more kids with differences. She is involved in a social skills group for kids on the spectrum. Not a perfect fit in facet she seems to be the peer model of the group, but she is a unique case. In so many ways she is typical-talks about her crushes, being a fashion designer or rock star. We, of course, worry about the future and if she will plateau. We would also love her to have a good friend to play barbies with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2010 Report Share Posted September 20, 2010 Hi everyone! We have a new family joining today! Here is what they had to say... Just recently heard about this condition through my employer. I am interested in learning about the causes. Welcome, please tell us more about you. What is your name? How did your work know about us? Please feel free to ask any questions that you may have. Hellard IMDSA President brandy@... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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 May 25, 2011 Report Share Posted May 25, 2011 Hi , I can completely relate to your story about finding out about your son, since that was VERY similar to that of my daughter. My Mom was the one who diagnosed him (she knew of MDS) and then I had to convince the Dr. to do the test. They reluctantly agreed and it took 2 weeks to get the results (they have to watch the cells divide and document it). There are several types of tesst (the FSH test is much faster - 3 days I believe for a result). It is not the best test for MDS since it doesn't give the detail in the results (%s of T21 cells) that the other 2 tests do. It sounds like the tests were already completed so the longest you should wait is 2 weeks. Don't leave it longer than that (I followed up at one week then two weeks then every couple of days) since they forget to give you results. My daughter looked a little different (we affectionately called her our 'little alien' since she had very big eyes) and it wasn't until about 5 months that we could see the DS traits. Strangely, she seems to have changed again (she is now 2) and it is not noticeable. When she is tired, we can slightly see the traits, but otherwise no one has ever mentioned anything...except my Mom. My daughter has no other physical traits of DS but we do all that we can to give her the most help and expose her to as much possible to give her a head start. I do believe that you treat your child like any other child (we do all that we can to help them succeed), it just doesn't come quite as easily to my daughter compared with my older daughter. Hang in there. The diagnosis time is difficult. We 'mourned' for the little girl that we thought was perfect, but now that she is almost 2 (we found out at 6 mos), I can tell you that you start to realize that you can put a label on a condition that your child has, but your child is still the person that you thought they were the day before the diagnosis. Life will again become routine (assuming your child even has MDS, as may not) and all of the things you worry about will just turn into actions you put in place to help both your children learn. My older daughter is a better person for it since she is part of the 'teaching' process as well. She doesn't know that there is anything different about her sister and I am not sure that I will ever proactively tell her (if she asks, I will certainly tell her the truth). My daugther with MDS is starting at a regular preschool in 2 weeks and we (including the teachers) think she will do great. Do your research, get the results and if its MDS, deal with the emotions as much as you need to. Your mind will go through all sorts of things and all of those things are normal. I am not a cryer (at all!) but this subject can reduce me to tears fairly easily. You have a family with this group that will cry and rejoice with you. Use it and contribute when you're ready but be sure to keep an eye out for the all tips and ideas from the members - they all do so much for their kids. Best of luck to you - it will be OK no matter what the result!! Allysa Welcome New Family! Hi everyone! We have a new family joining us today, here is what they had to say... My name is and I have a one year old with mosaic down syndrome. Would like a chance to contact others who are experiencing this. Welcome ! Please tell us more about you and your one year old! What is your child's name? Where are you from? I'm sure you will find this group to be very supportive and helpful! Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Come Join us in Orlando, FL. during July 8-10th at our Research and Awareness Conference! http://imdsa.org/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 That is hilarious that you called her your " little alien " , since that is exactly what my husband has called Caede from day one! For the first couple of months he had a big head, big blue eyes, and a little skinny body. Now he is slightly more proportional at 23 pounds! We know that there is definitely something going on with him, and the genetics people at our childrens hospital are pretty certain its MDS. We have pretty much accepted it already- even my husband, surprisingly, who isn't good at accepting when things are " wrong " . I told him and he was just kind of quiet for a minute, and he looked at Caede for awhile, then said, ok. We are trying to handle it well, and not change the way we treat him, and we're just waiting for more definitive news. (particularly % of trisomy 21 cells vs. normal) Thanks so much for the support and feedback, & congrats on your little one starting preschool! So exciting! ________________________________ To: MosaicDS Sent: Wednesday, May 25, 2011 4:09 PM Subject: Re: Welcome New Family! Hi , I can completely relate to your story about finding out about your son, since that was VERY similar to that of my daughter. My Mom was the one who diagnosed him (she knew of MDS) and then I had to convince the Dr. to do the test. They reluctantly agreed and it took 2 weeks to get the results (they have to watch the cells divide and document it). There are several types of tesst (the FSH test is much faster - 3 days I believe for a result). It is not the best test for MDS since it doesn't give the detail in the results (%s of T21 cells) that the other 2 tests do. It sounds like the tests were already completed so the longest you should wait is 2 weeks. Don't leave it longer than that (I followed up at one week then two weeks then every couple of days) since they forget to give you results. My daughter looked a little different (we affectionately called her our 'little alien' since she had very big eyes) and it wasn't until about 5 months that we could see the DS traits. Strangely, she seems to have changed again (she is now 2) and it is not noticeable. When she is tired, we can slightly see the traits, but otherwise no one has ever mentioned anything...except my Mom. My daughter has no other physical traits of DS but we do all that we can to give her the most help and expose her to as much possible to give her a head start. I do believe that you treat your child like any other child (we do all that we can to help them succeed), it just doesn't come quite as easily to my daughter compared with my older daughter. Hang in there. The diagnosis time is difficult. We 'mourned' for the little girl that we thought was perfect, but now that she is almost 2 (we found out at 6 mos), I can tell you that you start to realize that you can put a label on a condition that your child has, but your child is still the person that you thought they were the day before the diagnosis. Life will again become routine (assuming your child even has MDS, as may not) and all of the things you worry about will just turn into actions you put in place to help both your children learn. My older daughter is a better person for it since she is part of the 'teaching' process as well. She doesn't know that there is anything different about her sister and I am not sure that I will ever proactively tell her (if she asks, I will certainly tell her the truth). My daugther with MDS is starting at a regular preschool in 2 weeks and we (including the teachers) think she will do great. Do your research, get the results and if its MDS, deal with the emotions as much as you need to. Your mind will go through all sorts of things and all of those things are normal. I am not a cryer (at all!) but this subject can reduce me to tears fairly easily. You have a family with this group that will cry and rejoice with you. Use it and contribute when you're ready but be sure to keep an eye out for the all tips and ideas from the members - they all do so much for their kids. Best of luck to you - it will be OK no matter what the result!! Allysa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2011 Report Share Posted May 26, 2011 Hi , It is really strange - my husband immediately accepted it as well and never looked back. I was worried how he would respond since some husbands don't handle these types of situations well or harbor anger/guilt. He told me that she was his little girl and he would treat her exactly the same until he saw a need to change. He has been true to his word and treats her exactly the same as my older daughter (except for the year and a half difference in their ages). I am the one who 'watches' for anything which may need more work, meets with the ECI team, is involved with our local DS organization and takes her to places like 'My Gym' to help strengthen her muscles, etc. The funny thing is that I didn't tell the people at My Gym anything about her and they actually moved her up to the next class 4 months early because they thought she was ready. They expect more of her because they don't know any differently. I take such pride when strangers observe her and happen to mention that her speech is good or that she is smart (when she is counting or reciting 'three little pigs'). We get such joy from her successes. Once you get a result, get engaged with your local Early Childhood Intervention team and get a good pediatrician (if you don't have one already). If your son does have MDS, you will want to treat him like he is full DS and have all the testing completed. ECI will help you with your local resources, provide your therapy (OT, PT, Speech and cognitive). Try to get to them ASAP so that you can get these service started right away since you will benefit and so will your child. Your local Down Syndrome association may also offer free classes like Gymboree, music classes, signing classes (for you and your child), swimming classes and I would encourage you to utilize any resources you think would help Caede. You sound very positive for going through this testing but it sounds like you have already been through a lot. You are probably in a much better position to deal with the news, no matter what the outcome. Strangely enough, I also thought I was losing Lexie during my pregnancy. Just as an aside, we received the results on the blood tests and made a choice to have her skin tested as well. The difference in percentages was 40%, so the numbers can vary drastically as well as not providing an indicator of the severity of MDS. However, we needed as much information as possible at the time for our own knowledge. I am not advocating one way or the other, but just letting you know that the skin vs. muscle vs. blood %s can vary drastically and depending on the number of cells tested, may not be very accurate. I fought hard but could not convince my hospital to test more than 50 cells which is not a good sample size. They are very good at being sneaky with their testing methods, # of cells, etc. even when specifically asked. They even provide a print out of the cells under the microscope, which you should be provided (if not, ask!). You might also want to get a copy of his medical records as I also found lots of notes from the Geneticist that he never told me during the appointment. Beware,if you go to a geneticist, it really is only for the benefit of them collecting data and will not provide much feedback (unless you plan on having another baby). People's experiences with geneticists has been varied in the group, but many have found it to be a one way chat with you talking and asking questions and them not providing many answers. This may be because there aren't many answers to provide and also because that doesn't seem to be their role (still not completely sure what they do except collect research on your child and tell you the basics of DS). Wow - way too much info in one e-mail. Take what is useful and discard anything else! Kind Regards, Allysa Re: Welcome New Family! Hi , I can completely relate to your story about finding out about your son, since that was VERY similar to that of my daughter. My Mom was the one who diagnosed him (she knew of MDS) and then I had to convince the Dr. to do the test. They reluctantly agreed and it took 2 weeks to get the results (they have to watch the cells divide and document it). There are several types of tesst (the FSH test is much faster - 3 days I believe for a result). It is not the best test for MDS since it doesn't give the detail in the results (%s of T21 cells) that the other 2 tests do. It sounds like the tests were already completed so the longest you should wait is 2 weeks. Don't leave it longer than that (I followed up at one week then two weeks then every couple of days) since they forget to give you results. My daughter looked a little different (we affectionately called her our 'little alien' since she had very big eyes) and it wasn't until about 5 months that we could see the DS traits. Strangely, she seems to have changed again (she is now 2) and it is not noticeable. When she is tired, we can slightly see the traits, but otherwise no one has ever mentioned anything...except my Mom. My daughter has no other physical traits of DS but we do all that we can to give her the most help and expose her to as much possible to give her a head start. I do believe that you treat your child like any other child (we do all that we can to help them succeed), it just doesn't come quite as easily to my daughter compared with my older daughter. Hang in there. The diagnosis time is difficult. We 'mourned' for the little girl that we thought was perfect, but now that she is almost 2 (we found out at 6 mos), I can tell you that you start to realize that you can put a label on a condition that your child has, but your child is still the person that you thought they were the day before the diagnosis. Life will again become routine (assuming your child even has MDS, as may not) and all of the things you worry about will just turn into actions you put in place to help both your children learn. My older daughter is a better person for it since she is part of the 'teaching' process as well. She doesn't know that there is anything different about her sister and I am not sure that I will ever proactively tell her (if she asks, I will certainly tell her the truth). My daugther with MDS is starting at a regular preschool in 2 weeks and we (including the teachers) think she will do great. Do your research, get the results and if its MDS, deal with the emotions as much as you need to. Your mind will go through all sorts of things and all of those things are normal. I am not a cryer (at all!) but this subject can reduce me to tears fairly easily. You have a family with this group that will cry and rejoice with you. Use it and contribute when you're ready but be sure to keep an eye out for the all tips and ideas from the members - they all do so much for their kids. Best of luck to you - it will be OK no matter what the result!! Allysa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2011 Report Share Posted May 26, 2011 Hi Allysa, That was NOT way too much information! Anything I can get is valuable. We have a great pediatrician who had already gotten the ball rolling with early intervention months ago, before I made any mention of DS. (Just because of the obvious hearing loss & developmental delays) I didn't think about additional local resources, so thanks for that info & I will be looking in to all of that. I want to give Caede all the opportunities that I can, but I wasn't sure what was available or where to begin looking. So again, thanks for that! And I had read that it is best to get tests done on blood and skin cells because the percentages can be varied, so we will mention that to the geneticist at children's hospital when we're there. Its funny that you're kids are also a year and a half apart! Caede's older sister Gracie is the polar opposite of him and pretty much does everything for him. At first that's why we thought he wasn't talking- because all he has to do is let out this little high pitched squeal and she will run & fetch whatever it is that he wants. How she knows what he wants, I have no idea, but she does! And you also almost miscarried during your pregnancy? I'm sorry for that and glad that your little girl made it through. In doing some of the research on MDS, I read that an increased risk of miscarriage is common when your child has DS. So I don't know if that had anything to do with it or not, but the genetics people put it on Caede's " list " of MDS symptoms when I was being interviewed. And I guess that's why this whole process isn't freaking me out as much as everybody seems to think it should. Of course, I want him to have the best life possible and be as " normal " as possible. But I'm just so glad to have him HERE after fighting so hard during the pregnancy to keep him from being born too early. And especially after losing our first boy, I'm so glad to have this beautiful boy I have now, who has blonde hair & blue eyes just like his brother. (My daughter, adversely, looks just like her father- brown skin, brown hair, brown eyes!) We've just been praying about it a lot and we'll see what happens next, but no matter what the outcome is, we're just thrilled to have two healthy & perfect kids. Stevie (Caede's Mom) ________________________________ To: MosaicDS Sent: Wednesday, May 25, 2011 5:49 PM Subject: Re: Welcome New Family! Hi , It is really strange - my husband immediately accepted it as well and never looked back. I was worried how he would respond since some husbands don't handle these types of situations well or harbor anger/guilt. He told me that she was his little girl and he would treat her exactly the same until he saw a need to change. He has been true to his word and treats her exactly the same as my older daughter (except for the year and a half difference in their ages). I am the one who 'watches' for anything which may need more work, meets with the ECI team, is involved with our local DS organization and takes her to places like 'My Gym' to help strengthen her muscles, etc. The funny thing is that I didn't tell the people at My Gym anything about her and they actually moved her up to the next class 4 months early because they thought she was ready. They expect more of her because they don't know any differently. I take such pride when strangers observe her and happen to mention that her speech is good or that she is smart (when she is counting or reciting 'three little pigs'). We get such joy from her successes. Once you get a result, get engaged with your local Early Childhood Intervention team and get a good pediatrician (if you don't have one already). If your son does have MDS, you will want to treat him like he is full DS and have all the testing completed. ECI will help you with your local resources, provide your therapy (OT, PT, Speech and cognitive). Try to get to them ASAP so that you can get these service started right away since you will benefit and so will your child. Your local Down Syndrome association may also offer free classes like Gymboree, music classes, signing classes (for you and your child), swimming classes and I would encourage you to utilize any resources you think would help Caede. You sound very positive for going through this testing but it sounds like you have already been through a lot. You are probably in a much better position to deal with the news, no matter what the outcome. Strangely enough, I also thought I was losing Lexie during my pregnancy. Just as an aside, we received the results on the blood tests and made a choice to have her skin tested as well. The difference in percentages was 40%, so the numbers can vary drastically as well as not providing an indicator of the severity of MDS. However, we needed as much information as possible at the time for our own knowledge. I am not advocating one way or the other, but just letting you know that the skin vs. muscle vs. blood %s can vary drastically and depending on the number of cells tested, may not be very accurate. I fought hard but could not convince my hospital to test more than 50 cells which is not a good sample size. They are very good at being sneaky with their testing methods, # of cells, etc. even when specifically asked. They even provide a print out of the cells under the microscope, which you should be provided (if not, ask!). You might also want to get a copy of his medical records as I also found lots of notes from the Geneticist that he never told me during the appointment. Beware,if you go to a geneticist, it really is only for the benefit of them collecting data and will not provide much feedback (unless you plan on having another baby). People's experiences with geneticists has been varied in the group, but many have found it to be a one way chat with you talking and asking questions and them not providing many answers. This may be because there aren't many answers to provide and also because that doesn't seem to be their role (still not completely sure what they do except collect research on your child and tell you the basics of DS). Wow - way too much info in one e-mail. Take what is useful and discard anything else! Kind Regards, Allysa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2012 Report Share Posted April 7, 2012 Welcome, Kim. I am Beth. Our daughter Gracie is 4 and has MDS. You will find a lot of support and friendship in this group. Your little one will be a fantastic blessing. Gracie has brought us such joy that we are hoping to adopt another Down syndrome baby sometime soon. We have 3 other daughters at home with different special needs, ages 13, 14, and 16. Beth Quote Link to comment Share on other sites More sharing options...
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