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One twin with Ds


 
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morganlafey
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PostPosted: March 08 2010, 4:48 PM    Post subject:
One twin with Ds
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Hello, everyone! I'm new to the site, and I'm currious if any of you were in the same situation as me. I'm pregnant with twin girls (Laurel and Eleanor). Ellie has Ds, Laurel does not. They are fraternal twins, so they are basically just siblings sharing a room, but I haven't been able to find very much information about my situation. Has anyone every heard of this? I'd love to talk to someone who went through the same thing!
~Morgan
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kctahoe
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PostPosted: March 08 2010, 5:16 PM    Post subject:
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Welcome! I have heard of your situation, and know of one mom on the forum who has fraternal twins, of which one had DS, and another mom who has triplets, of which one had DS. Hopefully they will see your post soon and chime in. Glad you have found us. This forum has been a source of so much valuable information, and wonderful friendship.
K

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momofrussell
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PostPosted: March 08 2010, 5:22 PM    Post subject:
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Yep, it happens. Congrats and welcome!!! There are definately other parents who have had twins, one has DS. Smile

A.

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Hannah's mom
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PostPosted: March 08 2010, 6:22 PM    Post subject:
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welcome to Downsyn! I personally do not have twins but I have two different people in my area who have twins, one with DS and one without.Just wanted to say congratulations!!

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LittleKitten
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PostPosted: March 08 2010, 10:20 PM    Post subject:
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Hi! I have twin girls, Kelsey with Ds and Delaney without. They will be 3 next month. I'll try to answer any questions you may have.
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mhkueter
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PostPosted: March 08 2010, 10:59 PM    Post subject:
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Hi! I have twin boys. They will turn one in just a few days. Derek has DS and Dylan does not. Feel free to contact me any time.
Welcome to the board. Your not alone.
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kokiechick
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PostPosted: March 08 2010, 11:21 PM    Post subject:
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Welcome & Congratulations! My little brother has a twin sister. He has DS and she does not.

Feel free to PM or email Smile.

Qadoshyah

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mandy
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PostPosted: March 09 2010, 12:44 AM    Post subject:
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Hi, I have triplet boys who will be 6 this month. Adam has DS and Oliver and Liam do not. I would be happy to help with any questions or concerns you may have.
Mandy

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mee
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PostPosted: March 09 2010, 9:41 AM    Post subject:
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I have twin boys and Isaac (born first) has DS while his brother, Will, does not. I was not aware of the DS during pregnancy, but feel free to PM me with any questions. My boys will be four at the end of June. Hard to believe! I know of four other families in our town with fraternal twins, one with DS. I thought it was uncommon, but apparently not!

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Shelley
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PostPosted: March 09 2010, 11:53 PM    Post subject:
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Congratulations!! I too have twins - one (Hannah) has T21 and her brother (Kit) does not. I love/d being a twin mum. Mine are 5 now and have jsut started kindy at the same local school here - they are both loving it although school is a big adjustment for both of them. I knew at 20 weeks that there was a high risk for 'twin 1' to have DS - and in the end had an emergency caesar because the dr was worried about how she was doing - turns out she was doing great. Can't wait to see some baby pics of your two. Like the other parents - I am happy to answer any questions - and no doubt by now someone has mentioned Roadmap to Holland written by the gorgeous Jennifer Graf Groneberg - who has 3 children - including twin boys (one of whom has DS). Very Happy

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morganlafey
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PostPosted: March 10 2010, 8:21 AM    Post subject:
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Wow! Thanks for the great welcome! I'm so glad to find other moms who have dealt with this. Like I said, there is practically no info out there.
Here are some of my questions:
1. How did your Ds baby differ developmentally from your non-Ds baby? Did they seem pretty much the same at first? When did you notice a difference in development? What sort of difference?
2. How early did you find out? Did you know before, at , or after birth? When did you start getting help (physical/ocupational therepy)?
3. Was there any sort of baby gear that really came in handy? (So I can get it on my registery!)
4. How do you keep other people from constantly comparing your kids? We will never do so, but how do you deal with other (not so smart/sensitive) people doing it? I'm sure it will happen eventually.

Ok, that's enough for now. lol. Sorry if that seems like a lot. I'm just so excited to find others that I can ask questions of! These are my first children, so I really don't know what to expect. Reading about twin motherhood is one thing, doing it is another! Especially when I couldn't find anyone who's babies where like mine. (not that anyone's babies could be as wonderful as mine will be, but I might be biased. lol)

Thanks again, everyone!
~Morgan
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lilpayton
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PostPosted: March 10 2010, 10:09 PM    Post subject:
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I know of a mom that has twin girls, one with DS and one without. PM me if you'd like her info. Smile

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lilpayton
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PostPosted: March 10 2010, 10:12 PM    Post subject:
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BTW there is also a mom that has twin boys and both have DS ... she lives in DuBois ... how far is that from you?

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LittleKitten
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PostPosted: March 11 2010, 9:48 PM    Post subject:
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1. How did your Ds baby differ developmentally from your non-Ds baby? Did they seem pretty much the same at first? When did you notice a difference in development? What sort of difference? My girls were preemies. Differences were apparent from the very beginning. Both girls had to learn to suck, and it took Kelsey a bit longer to master the process. Her sucking was different too. At first it was almost a chewing motion, but eventually she developed a normal suck. She has low muscle tone and this became apparent soon after I got the girls home. She was (still is really) very floppy. Both girls slept a LOT their first few months, but Kelsey slept more. She just didn't seem very alert and I was really worried that she would always be like that. She's not. It's almost like one day she just woke up and became interested in her surroundings. I call it her awakening! It took her much longer to smile, but now she has a smile that lights up the room. I thought she would never roll over, sit up, crawl, walk, etc, but eventually she did. I blame the low tone for most of that. Now she is much better at climbing than her sister, little daredevil that she is. She is also more charming Smile

2. How early did you find out? Did you know before, at , or after birth? When did you start getting help (physical/ocupational therepy)? I had a NT scan at 12 weeks which indicated an increased chance of Ds. I didn't have any other prenatal testing except u/s. No other problems showed up until around 31 weeks when the doctor noted some concerns at an u/s. She was born a week later and the doctors strongly suspected Ds right away and had her tested.

3. Was there any sort of baby gear that really came in handy? (So I can get it on my registery!) I can't think of anything special you might need.

4. How do you keep other people from constantly comparing your kids? We will never do so, but how do you deal with other (not so smart/sensitive) people doing it? I'm sure it will happen eventually. I can't say that this has been a major problem with us so far. Maybe people are comparing a negative way, but they keep their thoughts to themselves. Funny thing, when I take the girls out shopping Kelsey is the one who gets the most attention, and so far it has been positive attention. Once at Burger King a lady came over and tells Kelsey how cute she is, then looks at her sister as an after thought and tells her she's cute too. Of course, I expect the day will come when people will give she strange looks and not think she is so cute. I just hope people have the sense to keep their traps shut!!! I'm probably the worst at making comparisons; it's hard not too when it's constantly staring you in the face. Kelsey's delays make me a little sad at times, but then she smiles that charming smile and gives me a hug and everything is ok.
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Shelley
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PostPosted: March 15 2010, 7:28 PM    Post subject:
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morganlafey wrote:
Wow! Thanks for the great welcome! I'm so glad to find other moms who have dealt with this. Like I said, there is practically no info out there.
Here are some of my questions:
1. How did your Ds baby differ developmentally from your non-Ds baby? Did they seem pretty much the same at first? When did you notice a difference in development? What sort of difference?
2. How early did you find out? Did you know before, at , or after birth? When did you start getting help (physical/ocupational therepy)?
3. Was there any sort of baby gear that really came in handy? (So I can get it on my registery!)
4. How do you keep other people from constantly comparing your kids? We will never do so, but how do you deal with other (not so smart/sensitive) people doing it? I'm sure it will happen eventually.

Ok, that's enough for now. lol. Sorry if that seems like a lot. I'm just so excited to find others that I can ask questions of! These are my first children, so I really don't know what to expect. Reading about twin motherhood is one thing, doing it is another! Especially when I couldn't find anyone who's babies where like mine. (not that anyone's babies could be as wonderful as mine will be, but I might be biased. lol)

Thanks again, everyone!
~Morgan


Sorry I worte a reply a few days ago and then lost it mid post - so here it is again!!!
1. At first besides the fact that Han needed a nipple shield to attach for feeding and slept through the night - no difference. The difference became apparent to me around 6 months when her brother was sitting up and babbling lots and very keen to explore his environment. hannah was happy and engaged etc but didn't sit up until 10 months. The difference between them is obvious in many areas - and yes I noticed it every day (I don't so much now - just sometimes). I also noticed the many ways in which they were at the same or similar points developmentally - eg they play together in an age appropriate manner.
2. We had it confirmed after birth but at 20 weeks knew about the AVSD and at 29-30 weeks Hanah's u/s results started to concern us - not growing as she should.
3. Best baby gear was a rocker chair that had a 5point harness as it meant that Han could 'sit up' or nearly while her brother was playing near/with her; same for the bath seat and the therapy tyre. Double pram - very important!!!
4. This one was really difficult for me to work through. I used to walk them every day - often up to our local shopping precinct - where everyone (esp the nonnas - I live in an Italian part of Sydney) just love babies - and TWINS - definitely a spectacle. People would peer into the pram all full of anticipation and then look confused - mostly cos Hannah was so much smaller than her brother - and he of course was chubby interactive, smily stereotype - Hannah was not. Some people were rather agressive quizzing me - some days it was more like an inquisition!! I didn't care about hannah's diagnosis so much by this stage - but I was coping with 2 little babies and I didn't always feel up to the scrutiny (my hair was often a total mess too!! Laughing ). I soon learned to make sure I was straight up and VERY positive in a firm way - like Yep lucky the girl is litttle - of course Laughing having DS means she is probably going to stay a bit shorter anyways!! (said with a military style grin and gritted teeth - no one (well 1 exception) dared to offer me sympathy). SOme days, not many, I just couldn't do it and left them peering after us puzzled. Mostly it just meant that promoting awareness of DS was something I did from a very early age - it's something we all continue to do for our children and no doubt will for the rest of our lives. There were a number of occassions where I felt like the company and the person was very lovely and accepting and I actually enjoyed sharing the joy that is learning about DS. My mothers group too were lovely - very comfy with Han's diagnosis - no doubt helped by the fact that she was an adorable baby. The other trap to prepare for is the 'she doesn't look like she has down's and the 'it must be mild' - I still just tend to nod and smile and just say -'Well she definitely has Down Syndrome' and leave it at that - not worth trying to give a lecture on genetics to strangers.

Hope that helps.

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mellers_p
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PostPosted: August 04 2010, 6:54 AM    Post subject:
One twin with DS
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Hi Morgan
Just logged on for the first time in MONTHS and saw this! I have a twin boy and girl, Jake and Emily and Emily has Downs - they are 10 months old. they were born 10 weeks early so I didn't find out until they were 6 weeks old that Em has downs:
1. How did your Ds baby differ developmentally from your non-Ds baby? Did they seem pretty much the same at first? When did you notice a difference in development? What sort of difference?
When they were little and first came home, there wasn't much of a difference. It started soon after though - when Emily started sleeping through the night and Jake didn't! Also, Emily is much easier to look after, she isn't so demanding. She does like playing etc, but doesn't need constant attention like Jake does. She is also better at communication - she will shout or cry loudly when she needs something, it is a different cry for different things, whereas Jake will just cry - constantly....! Emily also has a time for everything. When she needs to go to bed - that is it, you can't delay it. She will scream until she is put in her cot!! Jake has started sitting up on his own now but Emily can't - she sits in a Bumbo seat so she can join in playing. Jake has 2 teeth, Emily doesn't. Really - developmentally, it was only when Jake started sitting up that there started to be a noticeable change.
2. How early did you find out? Did you know before, at , or after birth? When did you start getting help (physical/ocupational therepy)?
We were referred to early start groups and told about local DS support groups in the hospital. Em has had therapy from the beginning.
3. Was there any sort of baby gear that really came in handy? (So I can get it on my registery!)
A bumbo for sitting up - really useful. She also loves her play gym. to be honest, she likes everything Jake does. We don't treat her any differently and we expect everything from her that we do from Jake.
4. How do you keep other people from constantly comparing your kids? We will never do so, but how do you deal with other (not so smart/sensitive) people doing it? I'm sure it will happen eventually.
It hasn't really happened to us yet - we are very open with the fact that Em has Downs so people don't compare them. If they do, it is favourable! Like you say, it will happen soon though. We need to decide what is best in the future for both children. would Em be happier in a school that can cater for her special needs? Would it be better if they went to different schools so Jake wouldn't feel responsible for her or, god forbid, get bullied because of her?

These are my first children too - dealing with twins is hard enough, let alone the extra challenges that having a child with downs poses.
I wouldn't change her for the world though. she is my Em, she may have downs, but it's just another thing that makes her who she is!

congratulations and speak soon

Melxxx
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kittycat3376
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PostPosted: August 11 2010, 5:09 PM    Post subject:
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I suggest reading the book Road Map to Holland by Jennifer Graf Gronenberg. She is an occasional poster here as well under the screenname JenniferGG. She has twin boys, one with DS and one without and the book is about the first two years of their journey in the world of DS
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