Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 You know I think that this new poll is really important... because of just one reason.. how come those of us who had normal results ended having a child with MDS.. I mean I know that it doesnt matter because I love my with all of my heart... but what is the test for if it cant even detect MDS? So that was just a thought that i thought that i would share... and Mrs.. Kristy could you please add 's picture to the site? PLEASE???? lol THank you, ....Momma to 8 MDS and Devyn 6 MosaicDS wrote: There are 2 messages in this issue. Topics in this digest: 1. New members to egroup! From: " " 2. New poll for MosaicDS From: MosaicDS ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sat, 19 Feb 2005 12:18:47 -0000 From: " " Subject: New members to egroup! Yes, that's right -- more new members! Say hello to and Austen Grace. wrote: Hi there! My name is , and I am the proud mother of an extraordinary little child. (Of course, we all think that about our children, yes?) She is seven months old and the absolute center of our lives. Her name is Austen Grace. She has Mosaic Down Syndrome. She also has brown eyes and a spectacular laugh. MDS is just a part of her - not all of her. We live in rural upstate New York. Austen is our first child, though we hope for many more. I am a Biology and Chemistry teacher on maternity leave for two years. I look forward to joining your group and hearing the stories of your little angels! Sincerely, a.k.a. austengracesmom ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: 19 Feb 2005 15:47:22 -0000 From: MosaicDS Subject: New poll for MosaicDS Enter your vote today! A new poll has been created for the MosaicDS group: How many of you out there had an abnormal AFP result? Thank you for your time. o AFP was normal o AFP was abnormal o DIdn't have the AFP done To vote, please visit the following web page: http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! ________________________________________________________________________ ________________________________________________________________________ Become a member of IMDSA today at http://www.imdsa.com ************************************************* SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 The reason why AFP's can come up normal...especially in the case of mosaicism is because essentially due to the normal chromosomes....the original AFP test was not developed to detect chromosomal anomalies it was developed to detect neural tube defects.... 30% of all AFPs come back abnormal...of those 30% only 1% -5% actually have an abnormality...whether it be chromosomal or neural tube...etc...(keep in mind my statistics are going back 10 years) Any ways even an amnio with abnormal mosaic results could in fact result in a normal baby...the abnormal cells may only be in the amniotic fluid..and vice versa...(again info ten years old) An AFP test is not a test for down syndrome it is simply a screening test to see if maybe your child could have down syndrome or some other anomaly..it indicates that other tests could be necessary. Since I was in school and even since I had my youngest (the twins are 6) I know that the AFP has changed to really include the markers for DS (actually any chromosomal anomaly its just that DS is most common) but that testing has only been for the past 5 years or so.... I hope this answers questions.... Oh and my AFP with Ariel was normal... ....Mom to Ariel and the twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 When I was pregnant, I didn't even think twice when they asked me if I wanted the test. 97% of the time, when they are positive, they're wrong. I don't know what the percentages are for false negatives, but 97% for false positives was enough to convince me not to have it. I've seen moms have the test and then worry for the rest of the pregnancy. To me, it's just not worth it. That's just my OPINION, though. New poll for MosaicDS Enter your vote today! A new poll has been created for the MosaicDS group: How many of you out there had an abnormal AFP result? Thank you for your time. o AFP was normal o AFP was abnormal o DIdn't have the AFP done To vote, please visit the following web page: http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 <http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211> Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! ________________________________________________________________________ ________________________________________________________________________ Become a member of IMDSA today at http://www.imdsa.com <http://www.imdsa.com> ************************************************* SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 I had decided not to have the test due to the rate of false positives...plus i knew that if my child had downs i wast going to terminate my pregnancy so why add worry to a very happy time. Jess - Momma to 9 months MDS " , - Kenton County " wrote: When I was pregnant, I didn't even think twice when they asked me if I wanted the test. 97% of the time, when they are positive, they're wrong. I don't know what the percentages are for false negatives, but 97% for false positives was enough to convince me not to have it. I've seen moms have the test and then worry for the rest of the pregnancy. To me, it's just not worth it. That's just my OPINION, though. New poll for MosaicDS Enter your vote today! A new poll has been created for the MosaicDS group: How many of you out there had an abnormal AFP result? Thank you for your time. o AFP was normal o AFP was abnormal o DIdn't have the AFP done To vote, please visit the following web page: http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 <http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211> Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! ________________________________________________________________________ ________________________________________________________________________ Become a member of IMDSA today at http://www.imdsa.com <http://www.imdsa.com> ************************************************* SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Hi all, I want us all to understand that you doing these tests can help the medical world know if they are sensitive or not. Moreso, to know if to stop doing them or continue. Please help your caregivers rather than critisize their effort. Thanks Dr esezobor Jessie Cullen wrote: I had decided not to have the test due to the rate of false positives...plus i knew that if my child had downs i wast going to terminate my pregnancy so why add worry to a very happy time. Jess - Momma to 9 months MDS " , - Kenton County " wrote: When I was pregnant, I didn't even think twice when they asked me if I wanted the test. 97% of the time, when they are positive, they're wrong. I don't know what the percentages are for false negatives, but 97% for false positives was enough to convince me not to have it. I've seen moms have the test and then worry for the rest of the pregnancy. To me, it's just not worth it. That's just my OPINION, though. New poll for MosaicDS Enter your vote today! A new poll has been created for the MosaicDS group: How many of you out there had an abnormal AFP result? Thank you for your time. o AFP was normal o AFP was abnormal o DIdn't have the AFP done To vote, please visit the following web page: http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 <http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211> Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! ________________________________________________________________________ ________________________________________________________________________ Become a member of IMDSA today at http://www.imdsa.com <http://www.imdsa.com> ************************************************* SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Hi all, I want us all to understand that you doing these tests can help the medical world know if they are sensitive or not. Moreso, to know if to stop doing them or continue. Please help your caregivers rather than criticize their effort. Thanks Dr esezobor Jessie Cullen wrote: I had decided not to have the test due to the rate of false positives...plus i knew that if my child had downs i wast going to terminate my pregnancy so why add worry to a very happy time. Jess - Momma to 9 months MDS " , - Kenton County " wrote: When I was pregnant, I didn't even think twice when they asked me if I wanted the test. 97% of the time, when they are positive, they're wrong. I don't know what the percentages are for false negatives, but 97% for false positives was enough to convince me not to have it. I've seen moms have the test and then worry for the rest of the pregnancy. To me, it's just not worth it. That's just my OPINION, though. New poll for MosaicDS Enter your vote today! A new poll has been created for the MosaicDS group: How many of you out there had an abnormal AFP result? Thank you for your time. o AFP was normal o AFP was abnormal o DIdn't have the AFP done To vote, please visit the following web page: http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 <http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211> Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! ________________________________________________________________________ ________________________________________________________________________ Become a member of IMDSA today at http://www.imdsa.com <http://www.imdsa.com> ************************************************* SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi, In my opinion, the majority of the medical community are not sensitive. Recently I went onto the NDSS website. There is a survey there done by a young Dr. I think he was from Yale. He did a survey on moms' who recently had a child with Ds, and asked how sensitive the physicians did. They failed big time! The reason why he did this survey is because he has a sister with Ds. Also NDSS has a wonderful new program called Changing Lives. It is geared towards the medical community to help stop the sterotype on these beautiful children. It is very imformative. Anyone can contact NDSS at there website www.ndss.org and request a copy of it. It is wonderful. The physicians I came in contact with when my son was first born, except my Dr. where very insensitive! , mom to 9, 7, 4 and 2MDs > >Reply-To: MosaicDS >To: MosaicDS >Subject: RE: Digest Number 1685 >Date: Sun, 20 Feb 2005 10:28:03 -0800 (PST) > >Hi all, >I want us all to understand that you doing these tests can help the medical >world know if they are sensitive or not. >Moreso, to know if to stop doing them or continue. >Please help your caregivers rather than critisize their effort. >Thanks >Dr esezobor > > >Jessie Cullen wrote: >I had decided not to have the test due to the rate of false >positives...plus i knew that if my child had downs i wast going to >terminate my pregnancy so why add worry to a very happy time. >Jess - Momma to 9 months MDS > > " , - Kenton County " wrote: >When I was pregnant, I didn't even think twice when they asked me if I >wanted the test. 97% of the time, when they are positive, they're wrong. >I >don't know what the percentages are for false negatives, but 97% for false >positives was enough to convince me not to have it. I've seen moms have >the >test and then worry for the rest of the pregnancy. To me, it's just not >worth it. That's just my OPINION, though. > > > > New poll for MosaicDS > > > >Enter your vote today! A new poll has been created for the >MosaicDS group: > >How many of you out there had an >abnormal AFP result? Thank you for your >time. > >o AFP was normal >o AFP was abnormal >o DIdn't have the AFP done > > >To vote, please visit the following web page: >http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211 ><http://groups.yahoo.com/group/MosaicDS/surveys?id=1664211> > >Note: Please do not reply to this message. Poll votes are >not collected via email. To vote, you must go to the Yahoo! Groups >web site listed above. > >Thanks! > > > > > > > > > > >________________________________________________________________________ >________________________________________________________________________ > > >Become a member of IMDSA today at http://www.imdsa.com ><http://www.imdsa.com> >************************************************* >SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION >************************************************* >Contact IMDSA Today at: >IMDSA~PO Box 1052~lin,TX~77856~USA~1- >************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 The way I am reading Dr. Esezobor's post is about the sensativity of the test, not the Dr. I didn't take the test myself just not because of the possibility of the false readings, but simply because I did not want to know. I wouldn't have done anything with a positive result, and knowing myself I would have been an emotional wreck had I known she had mds. I know for some people it is a good thing to prepare for it emotionally, but for me it was best to not know. I had a wonderful pregnancy, and when we found out, I could look into my baby's eyes and fall in love with her. I guess we all deal with the info differently, but for me it was best not to know. Luanne mom to Mahrya 8 mds Green wrote: Hi, In my opinion, the majority of the medical community are not sensitive. Recently I went onto the NDSS website. There is a survey there done by a young Dr. I think he was from Yale. He did a survey on moms' who recently had a child with Ds, and asked how sensitive the physicians did. They failed big time! The reason why he did this survey is because he has a sister with Ds. Also NDSS has a wonderful new program called Changing Lives. It is geared towards the medical community to help stop the sterotype on these beautiful children. It is very imformative. Anyone can contact NDSS at there website www.ndss.org and request a copy of it. It is wonderful. The physicians I came in contact with when my son was first born, except my Dr. where very insensitive! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 My AFP results with were low but I just attributed it to my age. The AFP scores go dowm as age goes up even if there is nothing wrong with the baby. I did not have the amneo because I was afraid of the risks...but the level 2 ultrasound showed everything as normal also. It was not until we were testing for MDS at age 21mos. that I realized the significance of the AFP score. I had given birth to Kirk on March 31 and his AFP score was 280 where 's almost 2 years earlier was only 97 (one in 97 chance of having DS). I realized then that the differential of my age was obviously not the reason for 's low score....since I was even older when I had Kirk. It was at that moment I realized that did have MDS ( i had read a lot about it) I was more prepared when we received the positive results almost 2 weeks later. Still devastated but not surprised. Ross Mom to 7, 3, Kirk 23 mos. Quote Link to comment Share on other sites More sharing options...
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