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Down syndrome User Group
Welcome to the Down syndrome Group
About This Group:

This group is for anyone and everyone who is interested in Down syndrome. Perhaps you have a child with Down syndrome, or family member. We all have questions and sometimes the best resources are each other. Hopefully this group can help if you are struggling with a diagnosis either prenatally or after birth. This group was created with the hopes of educating and helping those who want to know about Down syndrome. If however, you are struggling with a decision regarding termination, please know that the people who are here, are here because they have either chosen or accepted Down syndrome in their lives. Whatever your questions, stories or concerns hopefully we can help.

Founded by Dragon1973 on March 8, 2010
20 members
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Welcome to the Down syndrome Group<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Welcome everyone!  If you are new here, please introduce yourself and tell us a bit about why you are here.  Post any questions you have about Down syndrome.
If I can help answer a question you may have that you do not wish to post, please do not hesitate to send me a message or note directly.  

Dragon1973 - Group Moderator (Aka Sandi)
15 Comments
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hi sandi, im dana.  im 38 and pg with baby #3, a beautiful girl with down syndrome.  i hope to see this group grow, it would be great to have much support!
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1227139_tn?1367231533
Nice to see you here!  I too hope to see this group grow.  Feel free to post anything, anytime.  How far along are you?
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My name is Jennifer & I am 17 weeks pregnant.  I was told this week that my baby may have ds.  I was told there is a 1 in 3 chance.  I am having a level 2 u/s & amnio on the 22nd of this month.  I am absolutely terrified of the amnio but I also really would like to know 100%.  I would like to have the next few months to mentally prepare myself & get more familiar with ds.  
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Hello Jenn,
Glad you joined the group!  
About your amnio, everyone's threshold is different, but I found mine painless.  The sensation that I would describe it as is feeling is a pulling or tugging sensation when they are removing the fluid.  The needle although long, was not painful.  I don't know if you have ever had any piercings, but when the nurse saw my navel piercing, she laughed and said that if I could handle that, this would be no problem, and honestly it wasn't.  I think that having a blood test felt worse!  One thing I would suggest is do a lot of deep breathing to calm yourself in case you are nervous.  I had a crazy woman just days before my amnio tell me that for her, it was really painful.  She had me out of my mind.  (No one should tell you terrible things when you are pregnant anyway!)  The hospital I went to (to have it done) was nice, (they even had a poster on the ceiling of a man in a swim suit!  Cute humour).  The staff really put me at ease, and it ended up being a great experience.  I had some crampy feelings after for about 72 hours, and my family doctor suggested bed rest for the 3 days.  I did, and was told not to lift or do anything strenuous.  I had no adverse effects from it, and as I always tell people, I was so glad I had it done, even though at the time we didn't expect anything out of the ordinary, we were so glad we got the opportunity to prepare and organize all the important things for Hunter's arrival.  For those that don't know, before my amnio, we had no markers or positives on any screening (at the time my odds were 1:385 for my age of 35).  When we found out it was a complete surprise.  Even after Hunter was born, we were told by 3 doctors that they did not believe Hunter had Ds.  We had set up a cardiologist appointment (in the first week of his life) and thank goodness, because it turned out that he had an 8mm hold (ASD).  Today the hole has repaired itself to 2mm.  (Hunter is now 7 months old in 5 days.)  We were also able to set up all his Early Intervention specialists and other appointments like a more specialized hearing test - which ended up normal even though the hospital test said refer.  So, I think there are definite benefits to finding out early, but like everyone will tell you, there is a small risk (for me at 16wks it was .5%).  Never the less, in the end the decision is a personal one, and only you can make it.  I hope whatever decision you make, please know we are here for you!  
Please keep us updated!
Sandi
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Thank you SO much for your response.  I have been reading a bunch online about it & 'most' women say they mostly feel cramping.  My dr has also reccommended bed rest & told me to not even drive for a few days. ??  I am pretty sure that we are going to go ahead with the amnio.  The only way that I would not do it is if the sonographer can tell us that our baby has ds by the u/s.  From what I have read, the odds of that happening are slim to none.  Rather than focusing on the amnio I am so anxious to see our little one again.  I can't wait to find out if it is a boy or girl.  Initially hearing the words Down Syndrome was a huge shock but now I am just praying that he/she is healthy & has minimal (if any) health problems.  I am only 17 weeks but I don't feel as much movement as I would like to feel.  I have also been concerned about the heart rate, it has been very fast.  My initial u/s @ 12 weeks said the heart appeared 'normal' but there were SEVERAL choroid plexus cysts on the brain.  My NT measurement was also elevated.  This is such a confusing time for me, I don't know what to think.  DH seems to think that everything is going to be fine & the baby does not have ds.  I appreciate his positivity but at the same time, I want him to be prepared.  I can't even allow myself to think that the baby won't have ds.  It's like in my mind I already have confirmation.  Maybe that sounds crazy but I don't want to get my hopes up & I would rather accept the fact now & direct my attention at educating myself.
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Jenn,
I think you are pretty focused and have your mind in the right frame.  If it were me, (and it was me a little while ago) I would do exactly as you are, I tend to prepare for the worst case scenario, and if things turn out fine in the end, so be it.  At least I wouldn't be shocked.  Give your husband time.  Everyone deals with a Dx (Diagnosis) in their own way.  For some, it's harder - for example, my husband also believed everything was going to be alright and he had accepted Ds easier than I did at first.  Honestly I thought maybe he just didn't understand the scope of Ds, but he got on the Internet on his own time and did the research.  From my job as an officer, I was involved in many Special Olympic/Torch Run events for special needs, and I have a few family members with special needs.  I thought of the two of us, I would have been the one to be "more prepared" but emotionally, I think he was.  When I cried - he was there.  I call him my rock.  What made me realize that he knew more than I gave him credit for was when we were out for dinner one day, and he pointed out a teenager to me who obviously had Ds.  And my hubby was fascinated.  I knew at that moment, he understood, and things for some reason seemed to put me at ease.  It's funny, I never even thought much about that, but that moment is ingrained into my memory.  To this day, my hubby will see a baby or child with Ds, and he will say "look honey, look how cute he or she is".  I love that he does it.  It gives me comfort that he is comfortable with it.  That was my worry way back that he would be ashamed.  And to this day he has proved so many times over, that he is not.  We tell who ever will listen that Hunter has Ds, and we proudly display the Ds advocate magnet (as seen on my blog) on our vehicles.
Maybe if it is hard to talk about with your DH, put some literature around (in the washroom always works - you'd be surprised what your DH will read when in the washroom!) sometimes that gives them private perspective.
Something that was great at my amnio was we were able to find out about Hunter being a boy.  (The results also confirmed this of course.)  Having a fast heart rate in myth is said to be also a boy.  And about a sonogram telling you, you are right - it is very rare that a sonogram will ever confirm a Ds diagnosis - it is a tool like all the other pre screening tools.  As I said also, our hospital Fetal Echo Cardiogram didn't even pick up Hunter's ASD (hole).  We even had 3-D ultrasounds, and the only thing that it told us was the Hunter's pinky was curved inward (a Ds characteristic) but, so is mine - so that didn't tell us much.  I have some great PDF files that I got online about Ds, maybe what I will do is post a new question with the links to the documents so you can print them out.  
I would suggest that we start a new post thread, maybe about Amnio questions, since this one is for Welcome's.  I will start that one so we can continue there!  (I will copy this message into it.)
Sandi
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Hi.  I don't have a child with Down Syndrome but I am friends with Pertykitty and wanted to be able to offer support to her when she needs it.  I hope no one minds that I have joined.
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Hi there!
It's wonderful that you are providing support for Pertykitty!  Feel free to post anytime!  I love that you have joined and wish that others who do not have children with Ds would join also!!
Your messages and ideas will undoubtedly help others from a different perspective!  
Glad to see you aboard ship!
Sandi
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Hi all!
My name is Cindie and I too am a friend of Pertykitty. I have a 19 month old son who has down syndrome and also inherited my genetic skin disorder, EHK or Epidermolytic Hyperkeratosis.   I also have a 3 1/2 month old who is  "typical"
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Welcome Cindie!
I hope you will find this forum helpful, and a place where you can share your brags with us!
PS - TJ is a real cutie pie!
Sandi (Dragon1973) Moderator
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Hi! I have a four year old son with Down Syndrome and he is the joy of my life.  He is doing so well and has a lot of potential. However, there are two major issues, one of which I posted in the Down Syndrome Behavior section, but I'll mention them here...I'm in the process of potty training and it has been difficult. Any advice or methods would be appreciated. Also, my son is terrified of the shower after being doused with one and panics when I try to give him a bath. If there's anybody out there that has or had this trouble, I'd love to hear from you! Thanks!
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Welcome Milesmama!

It's great to hear from you on our forum.  I hope that someone can give you some advice about your potty training and shower.  I will ask my parent group about those two items and see what they say.  Maybe they will give me some suggestions to pass on to you!  I will post them as soon as I find out!

Sandi (Dragon1973) Moderator
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kids i just love you for joining for me!!!! im teary eyed that you have done this what a fantastic friend you are.  
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Hi how have you been? do you know alot about down syndrome im doing a report
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Hello Mckenzie110,

Welcome to our group!  If you have any questions, please send me a message directly if you are doing a report, and hopefully I can be of help!  I have assisted students previously for reports, and would love to help.

Sandi  (Dragon1973) Group Founder/Moderator
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