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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

Testing for Down's syndrome

85 replies

Thomcat · 25/05/2005 21:09

Does everyone get that much info on testing for Down's syndrome sent to them by the hospital when they get sent their appt letter for their 1st official scan?

Blimey

It's mentioned in my appt letter, I got another A4 sheet on info on screening for DS, a leaflet on serum screening for DS, an A5 booklet on testing for DS, and a A4 booklet which also talks about it.

Is that normal?

I'm already not really enjoying this 'you'll be seen my the head consultant', 'we'll book you into Queen Charlottes as they have the best maternity dept', 'we'll get you an early scan booked' way of dealing with me.

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motherinferior · 25/05/2005 21:09

Do you want to say no?

Honestly can't remember how much I got.

Enid · 25/05/2005 21:10

I didnt have any of that.

In fact, my gp thought a nuchal fold scan was totally unnecessary and a waste of money.

sounds like they are trying to pigeonhole you...

Thomcat · 25/05/2005 21:14

I am saying no to tests, I'll have the basic just to make sure it's okay and there's no heart problems we need to know about early but I don't need to know if he or she will have DS and I won't do anythign about it if they do tell me. I just want to make sure I do the best by he or she by checking for any serious problems that we could put right.

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Socci · 25/05/2005 21:16

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Socci · 25/05/2005 21:17

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Thomcat · 25/05/2005 21:19

Lottie is translocation DS but it has already been shown that neither D or I are carriers of the extra chromosome, we were genetically tested. As far as I'm concerned I'm at no more risk than anyone else but everyone's acting like I am.

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motherinferior · 25/05/2005 21:23

Sorry, babes, I didn't put that right - I did assume originally that you wouldn't test for DS - unless of course you would just like to know.

I honestly think the 'ordinary' scans one gets these days are so minute that they'd pick up any physical issues you might wish to know about in order to tackle in utero/straight after birth; I had two with each pg (I did have a nuchal fold) and my 20-week one with DD2 was totally amazing, I could see the shape of her nose and everything. That doesn't of course answer your question and yes I do think you're being overloaded with info - but I also think that you should be covered, to the extent that you wish, with just one 20 week scan shouldn't you?

JoolsToo · 25/05/2005 21:23

It's fair enough you don't want the test, I wouldn't either and of course I've never been in your situation so tell me to shut up if you want but it sounds to me like they're taking good care of you - isn't that a good thing?

Twiglett · 25/05/2005 21:23

didn't get any info at all TC, just got a scan date and time appointment and turned up

and I think you should tell them how you feel

though on the bright side, ignoring the mismanagement of info, how exciting, when is your scan???

motherinferior · 25/05/2005 21:25

(by the way I kept bellowing 'don't tell me the sex' which given the closeness of the scan was a bit difficult for them!)

The other thing that they may be worried about was the fact L went to special care - I can't remember whether that was simply because she had DS or anything else, but it's probably lurking around in your records and they get their poor little medical heads confused.

marthamoo · 25/05/2005 21:27

TC, playing devil's advocate here, maybe they think that you are more concerned about the risks/likelihood of having another baby with DS and they are trying to demonstrate extra care and attention. I know I didn't get all that stuff - just a scan date and the MW asked me if I wanted any of the 'extra' blood tests.

How are you feeling now, btw? Lottie still sleeping in a bit better?

Thomcat · 25/05/2005 21:29

I know and I it is good to be getting good care and stuff, but....... it does feel a bit,......oh I don't know, uncomfortable. It's great to have this bubs being looked out for, but I think I might just be being protective, about him/her and of Lottie. I don't want us to be a special case really, dykwim? I know they are just caring and looking out for us and that can all only be good I suppose but I hate all this whole fuss about 'ohh will it have DS' and the the way that people think that's a bad thing.
Ohhh not sure I can get this across to you all.

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motherinferior · 25/05/2005 21:31

No, you're bringing it across perfectly. I'm sorry they're being so crass.

Thomcat · 25/05/2005 21:31

ha! Lottie was sleeping well until we got relaxed and left the stair gate to her door open and she climbed all over me at 4.10am this morning

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JoolsToo · 25/05/2005 21:31

I think we know what you mean

bluebear · 25/05/2005 21:32

TC - I had my second baby at Queen Charlotte's and I got all of that in my appt letter - so they aren't targetting you in particular with the leaflets etc.

(Although obviously the 'seeing the head cons, and early scan are their way of fussing over you - probably because they assume that you will be more worried than a mother who doesn't have a child with DS)

marthamoo · 25/05/2005 21:33

We get you, babes Lottie's perfect, why are they making a fuss, 'nuff said!

marthamoo · 25/05/2005 21:34

4.10? You beat me, I had 5 am

Thomcat · 25/05/2005 21:35

Okay, well glad I didn't get all the info on DS because it's me, so thanks Bluebear. Hopefully when they get to know us as a family things will be easier all round and the kid gloves can come off.

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Davros · 25/05/2005 21:50

The other thing TC, if you don't want/need any extra care, go to the hospital that suits you best, you don't want extra trekking unnecessarily. I don't remember what info I got with DD but I was given lots of lovely extra care due to my medical condition and I DID want tests as you know.

Thomcat · 25/05/2005 21:57

Actually I'm happy with the hospital, i thought it was going to be quite a distance and a pain but from the info I got today it looks good. There's no way in a million years I'd go to my local hospital and last time I went to Watford which is about a 30 minute drive. this hospital is on the central line and a few stops away from where i work so will actually beeally handy to be so close to work. And it has a birth centre attached which is great.

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Davros · 25/05/2005 22:07

I went there at first TC as the Prof I saw works there and UCH, so switched to UCH as nearer (but filthy, ugh). Its a lovely building, even if it is next to the prison . Its so well known too, you do feel a bit special going there I think. you can pop into the QPR shop and get little one a strip!

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Thomcat · 25/05/2005 22:10

LOL, yes I saw the prison before I saw the hospital on the map! . It's a bugger to park round there as well aye, is that the case even with a blue badge do you know?
Who did you see Davros? I'm seeing MacCartney.
Not into QPR, used to know Kevin Gallen very well, but I'm a Chelsea girl, well I can't really even call myself an arm chair supported these days.

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Davros · 25/05/2005 22:13

I think you should be OK with a blue badge but check with the council there first as they are all different. I saw Prof Michael DeSwiet, he is wonderful, I've even heard him mentioned on Radio 4!!! My other Drs all wanted to know what he is like so I started to realise that he seems to be well known. Its much nicer round there than when I used to live there, then the best thing was that you could get to other places easily! I'd rather go there than some dump in Watford too

Ellbell · 26/05/2005 02:46

Hope no-one minds me 'gate-crashing' the SN forum. Just wanted to say that a colleague of mine is pregnant now at the age of 39, and is having real problems convincing the doctors, midwives, hospital that she really doesn't want extra tests. They have been trying to impose a nuchal scan and I don't know what else on her, even though she has made it quite clear that she doesn't want them and wouldn't have more invasive tests even if the initial tests gave her a high chance of a problem.

So... this does seem to be normal in cases of 'older mums' too.

Good luck TC

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