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Post by shirley on Jan 9, 2007 22:03:23 GMT
Got an appointment through today for us all to attend a GENETIC DIAGNOSTIC/COUNSELLING SESSION. Can anyone tell me what to expect from this appointment.
Ta Shirley
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Post by Rilith on Jan 9, 2007 23:44:55 GMT
They will talk about the results from Grace's cord sample.
Did you have blood tests too?? If so they will discuss their findings with you.
Basically they will let you know if you are carriers or whether Grace having downs is "One of those things"
Its nothing scary hun. Its quite interesting TBH. Genetics freak me out but I am eerily obsessed by it... LOL
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Post by shirley on Jan 9, 2007 23:55:57 GMT
we havent been tested yet , will they offer us to get tested?
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Post by max on Jan 10, 2007 13:02:42 GMT
I didn't get one of these? My GP did suggest Pete and I get referred to the genetic counselling team but the Paed Specialist said there was a 1% chance of further babies with downs and didn't elaborate further - she irritates me a bit to be honest! Anyway she signed us off as there was nothing to treat Caleb for - no health issues or physical abnormalities so now we just have to see a regular paed at some point - not that we have any appts or anything. Maybe I should push for some attention???
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Post by shirley on Jan 10, 2007 15:25:52 GMT
When Grace was only 2 weeks old , her paed sent off all her referalls for physio, speech therapy, one to one support (for when she starts nursery) and a couple of others i cant remember. As she said to me 'Grace may not need any of these things but best to get her on the waiting lists just incase). What harm can it do ?
Shirley
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Post by sarah on Jan 10, 2007 17:13:30 GMT
We had a genetics counselling session last week and I found it a bit upsetting to be honest... the lady was very clinical and factual and just explained how things 'went wrong'. She did a family tree to see if there were any links but it wasnt hereditry (sp?). Sorry if I sound negative but I wouldnt have gone if I'd known what it was like as it didnt tell us anything (there wasnt anything to really know!) and she also implied that we were unlucky because usually babies with downs miscarry (about 80% apparently). She certainly didnt take into account our beautiful boy! Sorry to rant! xxx
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Post by sarah on Jan 10, 2007 17:27:56 GMT
It was probably just an arsy woman who did ours! Forgot to say she also talked about next pregnancies, which was interesting... xx
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Post by mashpotato on Jan 10, 2007 17:46:38 GMT
We had one when Saul was born but wasn't anything different to what all the leaflets tell you. Bit of a waste as had to go all the way to London
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Post by Rilith on Jan 10, 2007 19:19:53 GMT
Ours was really good. I think they only tested us to confirm what they had found then....
We did the whole family tree thing too. Talked about other pregnancies, obviously we talked about the Pataus and how it could be passed on to the boys.
But like I said I found it really interesting, I had already done my research before going in so I was able to talk the jargon with the geneticist.... LOL
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Post by shirley on Jan 10, 2007 20:25:37 GMT
thanks, I am looking forward to it myself, will let yous know how it goes
Shirley & Grace xx
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Post by max on Jan 11, 2007 10:12:22 GMT
right thats it - I'm going to talk to my HV and Dr about getting more attention for Caleb - you seem to have a great local set up shirley!!
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Post by shirley on Jan 11, 2007 10:22:55 GMT
yeah so far so good, actually the speech therapist is just off the phone, she is coming out to see grace tommorow. cant believe it sure she isnt even babbling yet ha ha
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Post by vickia on Jan 11, 2007 12:27:01 GMT
I feel exactly the same as max. I don't feel like we're getting any attention for Thomas. We've only seen the pediatrician once and no one else! He's almost 7 months too! I've self referred for portage and i'm starting sing and sign classes next week but I'm not sure what else I can do on my own?
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Post by shirley on Jan 11, 2007 13:28:16 GMT
I think it is ridiculous the little assistance your babies are getting. As my paed said even if they dont need all these things it is good to have them on the waiting list. Grace is just 8 weeks and has already seen the physio twice ( give us excersies to do) and is already amlost holding her head on her own might I add!!!. And As isaid before the Speech therapist is tommorow. They both call to the house so it is no bother for us. Maybe it just depends on what health trust you belong to or something.
Keep on at them, you deserve it
Let me know how you both get on
Shirley & Grace
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Post by pinkshell1110 on Jan 11, 2007 21:37:46 GMT
i think your right shirley it depends on the trust, we are still waiting for speech therapist only been waiting a year lol, have been gettin physio since charlie first came out of hospital at 4 months and we still get it, we've had portage since just after charlie had his repair done .We have just started preparing for his statement ready to start nursery in september,but we dont have anywhere that teaches sing and sign, in my experience you do have to keep getting on to people otherwise they dont always offer you what LO's entitled to, your health visitor should be able to tell you evrything, i got most of my info about a month ago from charlies educationlal (sp)psychologist
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Post by nikki on Jan 14, 2007 19:17:49 GMT
well we didnt get a chance 2 c a geneticist and i havent a clue what portage is as we didnt get that either but hey its the isle of man there useless here apart from georgias school there really good!
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Post by max on Jan 16, 2007 9:08:43 GMT
My Health visitor is really good so I will ask her next week, my GP is also very helpful so I might go and see him too. I think because I didn't react very well when he was diagnosed (very tearful etc) they might be a bit wary of loading us with too much stuff - however I got over it very quickly and now want to get on with it all. Thanks for flagging this up Shirley - after all I've never even had a kid before let alone one that might need extra help - I don't know how to do all of this!
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Post by shirley on Jan 19, 2007 8:30:18 GMT
Hi Max,
Did you have any luck with the HV or the GP. I know what you mean about not knowing an awful lot, grace is our first baby and I think that we forget about her problems most of the time because we dont have another one to compare her too.
My brother was up last might with his grandaughter who is 2 weeks younger than grace. After seeing her it made me remember that Grace is going to take slightly longer to do things. For example I thought up until last night that Grace was doing marvelous with her head control ( and she is !!) but when little Lori arrived up last night she is like a baby at about 3 months.
Also I fed Lori last night and it was sooooo easy, whereas with Grace it takes about 45 minutes to get a 3-4oz bottle in her and she coughs and splutters all the way through it.
I suppose what I learnt last night is that I have to remeber that our Grace is special and that she has her little heart problem. To be honest I was really quite annoyed last night and just felt that it is so unfair that my little girl has such a struggle.
But now I have got up this morning and am feeling so much better.
Sorry if i have went on a bit, only wanted to ask how you got on, let me know
lol Shirley xx
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Post by Rilith on Jan 19, 2007 13:40:21 GMT
(((((((((((( HUGS )))))))))))))) it is the little things like that, that remind you of how hard our little ones work.
Holly didn't start anything properly until around 9 months, we did have people call out to see how she was and how she was doing, but nothing like Groups or Portage. Even then Holly didn't start portage until she was 1. They do tend to leave heart babies a little longer, especially if they have had or are having surgery in the near future. They like to make sure they are well enough to be able to cope with it. Thats why Holly didn't start til much later.
Also lots of areas don't have portage still. Our area has only had portage for a few years.
Next time you see the Paed, tell them that you are unhappy that you have been left out of the loop.
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Post by pinkshell1110 on Jan 19, 2007 14:36:56 GMT
poor old charlie was left a little longer with all this too because of his heart, he was just over a year when we started with portage, she is a lovely lady but to be honest i get the feeling that she doesn't do anything with charlie i feel she's there more for me to moan at and to ask for advice this week she has got charlie and i started on the PECS (picture exchange communication system) so we will see how it goes. I think heather had negative feedback with her portage worker too maybe its just our area sorry to be negative i'm sure you all have excellent portage ladies/men
shirley i know exactly how you feel with grace and lori i experience exactly the same with charlie and jasmin, and i always have to same the same as you "he'll get there but it will just take a little longer" and trust me when they do it is so special
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Post by shirley on Jan 23, 2007 7:28:16 GMT
Well, we went to the Genetics appointment yesterday . They never told me anything I didnt already know except that our chances of having another LO with DS are 1 in 100. They didnt do our bloods or anything as they said because of the type of Downs Grace has we are definatley not carriers.
This has not put me off having any more babies and once Grace is over her op and doing better we will be TTC again.
Shirley xx
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Post by max on Jan 23, 2007 9:31:22 GMT
you are in exactly the same situatuation as me Shirley - but my hubby is not convinced about having another - he can't imagine loving another child as much as he loves Caleb - Awwwwwww! Oh and I asked my HV about the fact we've not been seen by anyone since being signed off by the specialist - she went to follow it up and phoned back in the afternoon to say he has an appointment in June - as he has no health issues or developmental problems yet they didn't feel the need to see him any sooner. Which I guess is good (I'm glad he is doing well rather than needing lots of appts of course) but I would have liked to have been told without having to push for it first. Ah well, There is lots of developmental stuff round here I can do under my own steam.
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Post by pinkshell1110 on Jan 23, 2007 18:44:00 GMT
good for you max but do make sure you get any exta help that you and caleb are entitled too love shell,charlie and jasmin xxxxxx
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Post by Rilith on Jan 23, 2007 19:07:15 GMT
Glad all went well Shirley
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Post by shirley on Jan 23, 2007 19:33:31 GMT
Yes Max that is great , there is not much wrong with Grace so far either, she has a few problems with feeding because of her heart condition but that should be fine after she has her repair done. But like shell says just make sure yous arent missing out on anything that could help further. So far our physio and speech therapist have said that Grace is doing everything a normal baby should be doing but they still come out every 3 weeks to give me more hints and advise on how to help her even more.
Shirley xx
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