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chatterboxjo
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Joined: 14 March 2008

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Posted: 18 March 2008 at 8:45pm \| IP Logged

at the moment i feel so alone like there is no other cild like him

but surely somewhere there is ?

phillip is nearly a teen & ive never come across another child with this

is this syndrome so rare that there are not many of them

no seems to be able to answer that.

he seems to have bafiled even the doctors

he has servere learning/behaviour problems

slight autimisum has the mental age of 5/6

forgets alot of what learns has to have constant supervison

oh and not to forget the hyperactivity (means we dont get alot of sleep)

does anyone know of another child like this

MADMOO
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Joined: 06 September 2007

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Posted: 18 March 2008 at 8:48pm \| IP Logged

Sorry hun , dont know anything about this condition, but wanted to say hello, here if you want to have a chat. xxx

MumSam
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Posted: 18 March 2008 at 8:55pm \| IP Logged

I always thought SWAN syndrome was a name for a group of syndromes that are so rare they don't have a specific name. Syndrome Without A Name hence SWAN. My niece has a syndrome that only one other child who lives in the US has. She has something called 2Q- this means on her second chromosome it was missing a piece. Similar to Downs Syndrome but different chormosomes missing and not an extra piece on a chromosome. My niece is 17 years old, she has the reading age of about a 7 year old. She can write but again at a much lower age than her own. She also has autistic tendencies. She is quite independant now but like your son needed 1 to 1 supervision when younger. My Niece can get hyperactive and she will also get fixated on certain activities. I can remember when she was younger she had a thing about shutting the curtains and another time she would hang all her dolls and teddies off the door handles. She does things that some people see as odd like little twitches that she will pick up from someone else and then she can't stop doing them unless she really concentrates to stop.

Flipflop
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Joined: 09 June 2005

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Posted: 18 March 2008 at 9:00pm \| IP Logged

I've moved this topic to the health forums (children's).

chatterboxjo
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Joined: 14 March 2008

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Gender: Female

Posted: 18 March 2008 at 9:02pm \| IP Logged

yes it is a group of syndromes that they cant put a name to but i dont know of anyother child like him maybe it is rare i dont know all i know is even though it's hard work he is special & we wouldnt change him for the world he chose us

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Topic: swan syndrome