Hi Lovely ladies I hope you dont mind the intrusion, I have a question about DS that Im sure you can answer.
Can anyone predict the severity of DS before the bubs is born? Or is it a 'wait and see' kind of syndrome?
Im just curious. I know a little boy at DD's EI with DS, and another little girl in a differant group that i've not yet met. Also a few bubs we met at the childrens hospital over the years. My mate has a now 21 yr old sister (where did the years go!!!???) with DS, and she's the kindest person i've ever met!! Never shy to give a hug lol.
None of the adult DS I've met are self sufficient. Is this more common than not?
There was a stage there that I had DD (almost 5) looked at for DS because she is classic of DS minus the facial features. So she's not DS, but seriously everything else about her is. From her heart and airways issues, to developmental and tone problems.
Anyways, pointless ramblings. All the best to you guys and your little ones
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17-06-2011 10:07 #21
17-06-2011 11:09 #22
As far as severity goes, we don't really talk about someone having severe Ds
or mild Ds; you either have it or you don't (except for what's called mosaic Ds, which is very rare).
Some people with Ds are more high-functioning than others, in the same way that some people without Ds are more intellegent than others. It's just that for people with Ds, having a higher IQ than other individuals with Ds, still means it's quite low compared to the rest of the population IYKWIM. I don't know if I've explained that very well.
Within the babies in my Supergirl's EI group with Ds, some have much better muscle tone than others, some communicate better than others, some seem to learn more quickly than others. It seems random to me.
The other thing to consider is that adults with Ds were children with Ds quite some time ago, and the way in which children with Ds are taught has improved considerably compared to, say, 20 or 30 years ago. So it's reasonable to expect that today's babies and kids with Ds will possibly be more high-functioning (eg more able to live independently) because we have more information about how they learn, so are better able to teach them.
Hope that makes sense, I am a bit of a rambler too!
17-06-2011 12:46 #23
Thanks Fox That made heaps of sense.
19-06-2011 10:11 #24Oven
- Join Date
- Nov 2010
Overall though, she's really good. She will be 2 tomorrow, and I sat down and tallied her words yesterday, and came up with 14 words she can sign and 10 that she can say. Her latest word (signed and spoken) is STOP! She isn't walking yet, but is close. She is constantly impressing people, and challenging their perceptions of what a kid with Ds can do.
(Yes, I am a little bit proud of her!)
changedmymind, I have also been thinking of you. How are you getting along?
And ollylu and AlyshaM, did you girls get some results?[/QUOTE]
Aw, your little Supergirl sounds like she's doing really well! Hope they get the resp. issues sorted quickly. Do you have to see a paed regularly, or just split the time between GP for checkups and paeds for 'check-ins'? Cos I was wondering about that... My GP is fab and I know she does see one little girl with DS, but wasn't sure if you have to have completely different medical schedules, or just a few more visits to the paed.
Haha has she got 'no' in her repertoire?! My friend's LO likes that word a lot! Sounds like she is absolutely blossoming. Even I'm proud of her, so can't imagine how you feel! Wish her a happy birthday from Bean & I! We will celebrate with some cake! Hope you guys had a great time together celebrating. I'm sure she will be up and running around before you even know it, investigating everything there is to be investigated!
19-06-2011 10:17 #25Oven
- Join Date
- Nov 2010
Fox really answered the q, but I thought I would just put my two bobs worth in haha.
20-06-2011 08:24 #26Do you have to see a paed regularly, or just split the time between GP for checkups and paeds for 'check-ins'?
Haha has she got 'no' in her repertoire?!
25-06-2011 10:16 #27
No news here yet, still refusing the amnio at each appt so only time will tell when she decides to make an appearance! Only 5weeks left! She is still sitting in the 10-14th percentile for overall growth which could just be because of the low PAPPA but unsure! I have another growth scan next Thursday!
I should also mention at my OB appt last Thursday the doctor is now happy to transferr me over to midwife visits so I'm super stoked with that! Now I can get to discussing my birth plan properly!!
I hope everyone else is coming along well!
22-07-2011 19:18 #28
daisymae, what's the news? Has your little one arrived yet? Best of luck
28-07-2011 15:37 #29
All good here, still 12 weeks to go. Actually its funny cos the guy at the hardward store today asked when I was due and it took me a few minutes to work out what he was talking about.
In terms of the mini-me, we had an ultrasound a couple of weeks ago because they were a bit concerned I'm a bit bigger than I should be and its shown a potential duodenal atresia so she'll have surgery for that as soon as she's out if doesnt rectify itself in the meantime. She also has a heart defect so that will be more surgery at some stage. I'm now delivering at the Mater in Brisbane which I'm absolutely stoked about that. I've met with the senior Ob and the cardiologist and the midwife case manager and they have it all sewn up. I just have to turn up and they're coordinating everything. I have to go in now every 2 weeks for a growth ultrasound just so they can keep an eye out on her duodenal atresia. But I'm calm and comfortable cos I know I'm in the best hands possible. I have to relocate down there at 36 weeks just so they can be on top of everything if an early delivery is required. The only bad thing about that is when people ask me when she's coming I cant say...'hmmm it might be September.... or it might be October', makes me sound like a havent a clue.
05-08-2011 22:27 #30
Just thought I'd update and say I had bubby on the 25th! And absolutly nothing wrong with her at all! Glad I stuck to my own decisions and turned down what I though was necessary she just came out alot smaller then my first but still an "average" size at 6lb6oz. We called her Eleanor Grace
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