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Down's syndrome experiences

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cuppachaplz
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Down's syndrome experiences

Postby cuppachaplz » Fri Nov 14, 2014 11:21 am

34 weeks pregnant, and just found out my baby has downs.

He does NOT have T13 or T18, which were the concerns and resins for late /urgent amino so am feeling thankful.
I don't yet know what issues to expect with regards to the brain lesion which was the reason for the tests, however, would welcome any experiences anyone has with regards to what to expect. Also help with discussing with Jacob, who is 11(nearly 12)

Thanks in advance :)

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JabberJabber
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Re: Down's syndrome experiences

Postby JabberJabber » Fri Nov 14, 2014 11:33 am

HI there - it's been a really rough ride for you with all these tests and worries and concerns!

I don't have a child with Down's syndrome, but my aunt had DS. I know that things are very different now to when she was born, and there is a lot of support around for the whole family of people with DS.

This may be a useful place for you to look at - http://www.downs-syndrome.org.uk/for-new-parents/

I am sorry that I cannot offer anything more substantive, but we can all be around here to support you in the joys and challenges that lie ahead.

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autumnalgirl
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Re: Down's syndrome experiences

Postby autumnalgirl » Fri Nov 14, 2014 11:34 am

Hugs, and in a mixed way glad to hear he doesn't have the other T's.

I don't have any personal experience, but do believe in honesty at the revelant level. Give him a small amount if info and go from there, saying you don't know but will find out is ok too.

I also used to look after a little boy with Down syndrome and he was lovely!

Xx

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clothmama
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Re: Down's syndrome experiences

Postby clothmama » Fri Nov 14, 2014 11:38 am

That is wonderful news that he hasn't got 13 or 18, that would have been so devastating for you :hug:

I have only had experience of a little girl who was in Josh's class in France and she was the most loving, sunny, gorgeous little girl. I used to baby sit her sometimes and she could be bloody hard work but the whole family, the school, and the community got a lot of joy from her :love:

In terms of the lesions I'm really not sure what to expect. I know there are lots of Downs support groups, maybe you could find one local to you and see if you can meet some other mums / families and get some ideas on how to best come to terms with the diagnosis for yourself and to help Jacob.

Thinking of you all :cnthug:

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cuppachaplz
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Re: Down's syndrome experiences

Postby cuppachaplz » Fri Nov 14, 2014 12:37 pm

:hug: :hug: the brain lesions is not associated with DS, so need I really need the test results for this before I can figure out where we are.
T13/T18 are associated wight his type of brain lesions, and was what they were concerned about, so for me this is a massively positive result.
For me, DS is not a big issue. I just need to wait on the results with resagdrs to what may be causing/be the prognosis with regards to the brain abnormalities, before I can move forwards with what to expect.
I guess I can expect a fairly long week or so ahead... Keep cooking baby Cuppa :D :pregnant:
Thanks for the kind words everyone xxx :hug: :hug:

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amba
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Re: Down's syndrome experiences

Postby amba » Fri Nov 14, 2014 5:46 pm

Sorry I don't know much about downs, but my son goes to a special school that also have children with downs. To be honest i think my son is probably more hard work than they are lol
Like clothmama said they are hard work, but at least you can do research :thumbsup:

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Bugglyboo
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Re: Down's syndrome experiences

Postby Bugglyboo » Fri Nov 14, 2014 7:28 pm

Huge hugs. :hug:

I'm afraid I don't have much experience of down's apart from the children in the special needs group we've just started going to and the college age children who catch the bus every Thursday to do a trip into town from school. The little lad at play group is flipping gorgeous.


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