cerebal palsy

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Kenty
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Posted: Wed Mar 02, 2011 7:50 pm 
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hey, that's fab news laura!!! so glad the results were good....good luck on the consultant appointment


lily-ann has to have a x-ray on her hips tomorrow, apparently just routine for kids that aren't independantly weight bearing x
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LauraG
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Posted: Wed Mar 02, 2011 8:22 pm 
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Hope lily anns xray goes well 2. Hows she doin? Im lukin 4ward 2 georgias appointment in a strange way so that we can mayb get sum answers as 2 y shes behind in her development and wot we can do 2 help her.
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Kenty
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Posted: Wed Mar 09, 2011 9:03 pm 
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she's doing 'ok' physically she's like a newborn baby in a 2yr olds body, but personality wise she's so much better and more alert/happy than she's been in a long while...but she's been put on sedatives for her sleeping so is finally getting some rest at night

any news on georgia? are they any closer to finding out why she's delayed?
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LauraG
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Posted: Wed Mar 09, 2011 9:13 pm 
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Thats gud that shes a lot happier.

Dus lillyann hav difficulties sleeping at nite?

As uv read Georgia is getin sum special shoes 2 help her and bein refered to speech and language therapist. And we will c wot consultant says on 21st.
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LauraG
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Posted: Tue Mar 22, 2011 9:05 am 
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Georgia haad her appointkent yesterday wiv her consultajt to revuew her degelopkent and thedoctor is not happy wiv her development so this is wots happening............

1. She has had her bloods tuk to check her muscle structure.
2. Has had her bloods dun to check her chromosomes.
3. Referred her to speech and language therapist.
4. Refered her for hearing test.
5. Referred ger fir mri scan.
6. Sent leter to new Physio to try and hurry them up and saying that she advises the special shoes.

I think that's all that went on. It was so much to take in. Doc sed weneed to see y she was born prem maybe something went wrong that triggered the labour. She assured me its nothing iv dun and that I'm doin a great job. I nearly broke dwn in the doctors room Crying or Very sad

Even tho I knew the mri and blood tests wud probs b dun still found it a lot to take in.

She sed usually they hav to wait till 18s months to refer for mri scan but she sed if she refers her now then by the time we get appointment she will b past 18s months.
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Kenty
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Posted: Fri Mar 25, 2011 9:36 pm 
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ahhhhhhh hun, i know it's alot to take in, but all of this will help her, and you in the long run...hopefully some of the blood results will give some answers...even though watching them take blood from your child is awful(lily-ann screamed bloody murder when they took hers)

i totally agree, it is nothing you've done....i know it's hard to think that the problems your child has are just random occurrances....they usually really are!

that is weird, lily-ann was under 18months when she had hers i think...although i suppose different areas have different policies.

lily-ann's sleeping is awful, as a baby she slept a perfect 12hours but when Rett's really kicked in about 10months ago her sleeping went out the window and she will sleep for about 6hours and be awake for the rest of the night...docs put her on melatonin(a natural sleep hormone) and even that wasn't strong enough for her, she now has to have a sedative to send her off and keep her asleep...but she still wakes in the night Sad
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LauraG
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Posted: Sat Mar 26, 2011 1:00 am 
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Thats strange bout the sleep. Georgia had always slept fine until she was 13months and then she started waking up to 4 times a nite. Things arnt to bad nw and she wil wake twice a nite.

I feel much better nw things hav had had time to sink in and really hoping all of this will giv us the answers we need and i think im more worried in case we dnt get any answers.

How was lilyanns diagnosis made?.
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Kenty
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Posted: Tue Mar 29, 2011 8:03 pm 
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we were convinced she had cerebral palsy, but tests came back saying her brain was fine, so they called in a geneticist, one of the top ones in the country, and when he took a look at lily-ann he decided that Angelman syndrome was a high posibility and Rett was possible, mainly because of her grinding hand movements, but he said Rett's was the worst and highly unlikely...more blood tests were done and a month or two later we got a call saying that she definitely has Rett Syndrome Crying or Very sad Sad
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LauraG
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Posted: Wed Mar 30, 2011 2:12 am 
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I no it must hav been a shock as I no u really thort it was cp. But obviously woteva the outcome it dusnt change lillyann she will always b lillyann.

I am keeping an open mind wiv georgia as I no it cud b anything but I think the most thing im scared off is them finding nothing as then they can't explainn y she has the problems she dus.
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LauraG
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Posted: Thu Apr 07, 2011 7:35 am 
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Georgias chromosome test is bk and everything is fine and sum1 forgot to notice she had the test dun wen she was born.

So still waiting on sum otha bloods 2 come bk and the physio is coming out on wed 2 c Georgia.
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LauraG
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Posted: Fri Apr 08, 2011 8:58 pm 
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gt mri scan date through 28th april so lot earlier than i expected as doc sed not till june.

how long does it take for results from mri scan?
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LauraG
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Posted: Fri Apr 29, 2011 6:44 am 
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Georgia had her mri scan yesterday just waiting 4 results nw.
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Kenty
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Posted: Fri Apr 29, 2011 9:37 pm 
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i hope the results are positive hun!


and i see that georgia managed to walk...that is absolutely fantastic!!!
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LauraG
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Posted: Sat Apr 30, 2011 5:49 am 
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Yep shes walking its fantastic cant wait for her 2 get her boots and shel b walking everywhere.
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Kenty
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Posted: Mon May 02, 2011 8:48 pm 
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i am so happy for you...i still have a secret hope that one day i'll at least see lily-ann take a few steps, but everyday that hope gets less...so it's nice to see that you don't have to feel like that

hopefully the boots won't take too long to come and she'll probably love them
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