Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Hi Everyone We have a new family joining us today. Here is what they had to say.... My one year baby is suffring a myloblastc leukemia? searching for help, advice and comfort Welcome to our family! I am so glad you have joined us. I am assuming your baby also has mosaic Down syndrome? Please tell us all about you and family. Feel free to ask any questions you have. We have a lot of families here whose children have had leukemia, so I know you will get plenty of support and information through them. I look forward to hearing more about you and your family. Kristy Mom to Arron 27, 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 November 26, 2008 Report Share Posted November 26, 2008 Hello and welcome! my daughter is now nearing her 5 year remission/cure date with Myelodysplastic syndrome (leukemia) so if I can help ask away! Holly, mom to Hannah 8, MTLDS and MDS. Blakely 16, ADHD mild. Welcome new family! Hi Everyone We have a new family joining us today. Here is what they had to say.... My one year baby is suffring a myloblastc leukemia? searching for help, advice and comfort Welcome to our family! I am so glad you have joined us. I am assuming your baby also has mosaic Down syndrome? Please tell us all about you and family. Feel free to ask any questions you have. We have a lot of families here whose children have had leukemia, so I know you will get plenty of support and information through them. I look forward to hearing more about you and your family. Kristy Mom to Arron 27, 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 November 29, 2008 Report Share Posted November 29, 2008 Hi All! I guess I could've done a better job of introducing myself and my family. My name is Lindsae and I've been married to my husband for 10 yrs now. We have 2 daughters, Kayleigh, 7 and Maegan who will be 3 next month. We're also expecting our 3rd in May. Maegan was diagnosed with MDS via an amnio. So far she exhibits no physical or mental effects but we are always on the lookout so that we can address any thing that may come up at a later date. Thanks for the big welcome! Lindsae Kayleigh 7 and Maegan 2 (mds) > > Hi Everyone! > We have a new family joining us today! Here is what they had to say... > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > would like to be able to talk to other parents whose children have MDS. > > > Welcome to our family! I am so glad you have joined us! Please tell us all about you and your little girl! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! > > Kristy > Mom to Arron 27, 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 December 3, 2008 Report Share Posted December 3, 2008 Kristy- Thanks for the welcome! She's never had any therapy and she's not behind in her speech. I'm not sure we would even be aware of her MDS if it wasn't for the amnio results. She had a blood test after she was born that showed no MDS but I'm not really sure how many cells were tested etc. My concern is that she's about to be 3 and I know that there are some tests that are usually done now and I wondering if I should push to have those done even though she has no " symptoms " of MDS. I hope that didn't come out wrong but I don't know how else to word it. Any advice would be appreciated. Thanks Lindsae Kayleigh 7 and Maegan 2 (MDS) and #3 due in May > > > > Hi Everyone! > > We have a new family joining us today! Here is what they had to say... > > > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > > would like to be able to talk to other parents whose children have MDS. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > us all about you and your little girl! Please feel free to ask any > questions you have here. We will all be very happy to share our > experiences with you! > > > > Kristy > > Mom to Arron 27, 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 December 3, 2008 Report Share Posted December 3, 2008 Hi Lindsae I am not sure what tests you are referring to that should be done at 3?? It wasn't offensive for you to say that she has no symptoms of MDS. I think we all understand that you mean she is not showing any delays. But thank you for being so considerate in trying to choose your words carefully. My advice would be that you ask for another blood test just to be sure if she has MDS or not. And, insist that they test at least 100 cells but the more the better. The reason for this is because in a usual chromosome test for Trisomy 21 (Down syndrome) they usually pull 20 cells and only look at 2-5 of those cells. In most cases this is not enough to find MDS. And with the test you will have peace of mind one way or the other. It could be that the amnio was wrong in the first place. Amnios are not 100% correct. Kristy Subject: Re: Welcome new family! To: MosaicDS Date: Tuesday, December 2, 2008, 7:08 PM Kristy- Thanks for the welcome! She's never had any therapy and she's not behind in her speech. I'm not sure we would even be aware of her MDS if it wasn't for the amnio results. She had a blood test after she was born that showed no MDS but I'm not really sure how many cells were tested etc. My concern is that she's about to be 3 and I know that there are some tests that are usually done now and I wondering if I should push to have those done even though she has no " symptoms " of MDS. I hope that didn't come out wrong but I don't know how else to word it. Any advice would be appreciated. Thanks Lindsae Kayleigh 7 and Maegan 2 (MDS) and #3 due in May > > > > Hi Everyone! > > We have a new family joining us today! Here is what they had to say... > > > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > > would like to be able to talk to other parents whose children have MDS. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > us all about you and your little girl! Please feel free to ask any > questions you have here. We will all be very happy to share our > experiences with you! > > > > Kristy > > Mom to Arron 27, 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 December 3, 2008 Report Share Posted December 3, 2008 My daughter has very few symptoms only found out by a fluke. When they did find out I insisted they check the skin cells from the inside of her mouth. This is supposedly more accurate. They check over 900 cells for my daughter. I would just want to know if I were you, only so you can keep an eye on her thyroid and a few other things. Sue Isabella almost 2 mds and xxx Subject: Re: Welcome new family! To: MosaicDS Date: Tuesday, December 2, 2008, 5:08 PM Kristy- Thanks for the welcome! She's never had any therapy and she's not behind in her speech. I'm not sure we would even be aware of her MDS if it wasn't for the amnio results. She had a blood test after she was born that showed no MDS but I'm not really sure how many cells were tested etc. My concern is that she's about to be 3 and I know that there are some tests that are usually done now and I wondering if I should push to have those done even though she has no " symptoms " of MDS. I hope that didn't come out wrong but I don't know how else to word it. Any advice would be appreciated. Thanks Lindsae Kayleigh 7 and Maegan 2 (MDS) and #3 due in May > > > > Hi Everyone! > > We have a new family joining us today! Here is what they had to say... > > > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > > would like to be able to talk to other parents whose children have MDS. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > us all about you and your little girl! Please feel free to ask any > questions you have here. We will all be very happy to share our > experiences with you! > > > > Kristy > > Mom to Arron 27, 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 December 4, 2008 Report Share Posted December 4, 2008 Hi , First I wanted to introduce myself -- As a relitively new family, I welcome you. My daughter is 12 years old and has MDS. She is the joy of our lives and fills our house with music, dancing and a great dry sense of humor. She was diagnosed at 11months and showed 20% cells affected. To get back to your posting.....did you have any testing done after your child was born? 12 MDS and 18's mom, Pattie Subject: Re: Welcome new family! To: MosaicDS Date: Tuesday, December 2, 2008, 8:08 PM Kristy- Thanks for the welcome! She's never had any therapy and she's not behind in her speech. I'm not sure we would even be aware of her MDS if it wasn't for the amnio results. She had a blood test after she was born that showed no MDS but I'm not really sure how many cells were tested etc. My concern is that she's about to be 3 and I know that there are some tests that are usually done now and I wondering if I should push to have those done even though she has no " symptoms " of MDS. I hope that didn't come out wrong but I don't know how else to word it. Any advice would be appreciated. Thanks Lindsae Kayleigh 7 and Maegan 2 (MDS) and #3 due in May > > > > Hi Everyone! > > We have a new family joining us today! Here is what they had to say... > > > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > > would like to be able to talk to other parents whose children have MDS. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > us all about you and your little girl! Please feel free to ask any > questions you have here. We will all be very happy to share our > experiences with you! > > > > Kristy > > Mom to Arron 27, 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 January 11, 2009 Report Share Posted January 11, 2009 We are in Clayton, so not too far away. We will be seeing Dr. Koepke at UNC on Tuesday. Do you know of him? Thanks again for the welcome. Kristi > Hi Kristi, > I have a daughter who has MDS (age 26) and we live in Durham, NC. > Just thought since we must live close to each other, I'd offer my > support in any way you may need it. > K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi Kristi, No, I am not familiar with Dr. Koepke. When Annie was diagnosed, we lived in Chicago. Since then we really haven't had any dealings with a geneticist. Good luck on Tuesday. I know it's a difficult time for you. > We are in Clayton, so not too far away. We will be seeing Dr. Koepke > at UNC on Tuesday. Do you know of him? Thanks again for the welcome. > Kristi > > > Hi Kristi, > > I have a daughter who has MDS (age 26) and we live in Durham, > NC. > > Just thought since we must live close to each other, I'd offer my > > support in any way you may need it. > > K. > > > Quote Link to comment Share on other sites More sharing options...
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