Down Syndrome support

wizzfizz

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Latest post on 10 September 2012 - 20:10

Hello Ladies, can anyone recommend a good Dr for a newborn baby with Down Syndrome? Are there any support groups here? I have seen all4downsyndrome.com, just wondering if anyone can help with a recommendation/personal experience in Dubai. TIA

hilsbils58551

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Latest post on 14 September 2012 - 21:58

it's also how much effort parents put into the development of their children, regardless of their ability...if that makes sense? edited by coco pops on 13/09/2012 Oh yes makes total sense. I think that can only work if both parents are fully committed and unfortunately I dont think Dh would entertain the idea. I hope we dont have to face a decision like that and think if the test was positive it could be very divisive.

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Turnip

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Latest post on 14 September 2012 - 21:23

Aww coco pops - thanks! **blush** I think you hit the nail on the head!

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coco pops

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Latest post on 13 September 2012 - 22:35

Turnip has said pretty much what I would have said...only better :) eta: it's also how much effort parents put into the development of their children, regardless of their ability...if that makes sense? <em>edited by coco pops on 13/09/2012</em>

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Turnip

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Latest post on 13 September 2012 - 21:48

Hi hilsbils, I think you're referring to the NT scan, which is done between 11-14 weeks. It's a screening test and not a diagnostic test - the only way to ascertain if your baby has DS is to get CVS or an amnio. Yes - children/ individuals with DS have a wide range of abilities but regardless of ability, having a child (DS or not) is a rewarding experience. IMHO, all children, whether they are typical or have additional needs, present challenges - which is what makes parenting such an exciting journey! If you do find out you are expecting a child with DS, it makes a lot of sense to speak to a doctor and a support group. What you might find most helpful is to meet other children with DS! There is also quite a bit (on the web) written by fathers of children with DS - I assure you, all of them unconditionally love their child and are proud of their achievements! If you have any questions, I'm also happy to help:)

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hilsbils58551

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Latest post on 13 September 2012 - 21:11

Thanks so much. I understand that at some stage (16 weeks??) there is a scan and blood test that can be done to ascertain if its downs. No longer is the risky amnio-test required. I know without a doubt if the test is positive that my Dh would not be keen to proceed, but I would not want to terminate. Ive come too far on the journey and have too much to offer to waste a life. I have read and heard some heartening stories about families with wonderful downs children who have found it very rewarding. But i worry about the chance of extreme dependency and poor functioning. If there was a support group or doctor to access I would make sure Dh and I spent a lot of time asking Qs and finding out all we could to rest Dhs mind. But I think he may find it very hard. In the same way he wont consider adoption. Maybe men can tend to be a bit genetically proud that way? Thanks for any insight

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coco pops

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Latest post on 13 September 2012 - 20:57

Sorry to intrude - are you expecting a downs baby? Its a big worry and question for me as I'm 41 with "questionable egg quality" so we wont know for some time yet whether or not its downs. Would love to hear more about your situation If you need any questions answering, I'm happy to help :)

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coco pops

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EW GURU

Latest post on 13 September 2012 - 20:40

As Turnip suggested All4DS is the best place to start. They have three groups 0-5, 6-13 & 13+ ( if I remember correctly). I know the 0-5 group are quite active in meeting up etc with their little ones. Also, All4DS will be able to advise your friend on the Early Intervention Plan for little ones. They'll be able to recommend Doctors too. If your friend requires any more info, I'm also very happy to help :)

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Tablair200443706

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Latest post on 13 September 2012 - 20:26

I know there is definatly a support group here as a friend was going, however she has since moved back home so im not sure if i can get the details. Will try, but perhaps looking up on FB or something perhaps you will find it there? best of luck

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Turnip

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Latest post on 12 September 2012 - 21:30

You are very welcome!:)

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wizzfizz

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Latest post on 12 September 2012 - 20:28

Turnip, thank you SO much, so so so appreciate it.

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Turnip

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Latest post on 11 September 2012 - 21:46

wizzfizz - Dr. Mike Loubser at Infinity Clinic. He sees many children/ infants/ young adults with DS. All4DS is the right place to start, please leave your email if you want to chat further.

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wizzfizz

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Latest post on 11 September 2012 - 19:27

Thanks for your reply hilsbils - I'm asking for a friend who isnt having much luck finding information/support. Thought maybe some EW ladies may know or can point me in the right direction...? Good luck with your journey, hope all is healthy and successful.

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