Williams Syndrome

[KateBall]

Does anyone have a child with this dx. I came across it while looking something else up on the internet mentioned in another thread and having read all about the signs etc. my son fits them all. Don't know now whether I'm just being paranoid

[darky]

i only heard of it on saturday when i met ian jordon. he thought my girl seemed to have some charactoristics of it. ive read up on it, and the pyschological profile fits her to a tee, but she has some but not all of the physical features.

 

my girl had a blood test for fragile x yesterday, now that profile fits her, including the physical features. just got to wait a month or so now for the results!

 

if you google williams syndrome there is a whole wealth of info on it. fragile x to. there seems to be some similarities between the two dx's.

[KateBall]

i only heard of it on saturday when i met ian jordon. he thought my girl seemed to have some charactoristics of it. ive read up on it, and the pyschological profile fits her to a tee, but she has some but not all of the physical features.

 

my girl had a blood test for fragile x yesterday, now that profile fits her, including the physical features. just got to wait a month or so now for the results!

 

if you google williams syndrome there is a whole wealth of info on it. fragile x to. there seems to be some similarities between the two dx's.

 

 

Thanks for the reply Darky. My son was tested a long time ago for fragile x because that was suspected at one stage but this was negative. Is there a genetic test for Williams. I read up on it too and it really fits my son except there is no mention of them not liking change and having routines (both of which he has similar to autistic traits). I've got to look into it more though. It just makes you wonder if our children arne't being diagnosed as AS because they don't quite fit but professionals don't have sufficient knowledge to diagnose what it truly is. So many are being missed.

[car2]

WOW!! I just read up on fragile x and williams syndrome and my son could fall into both of those. Now I realise why the diagnosis process takes so long for AS. It never occured to me that my son could have those other conditions. Don't quite know what to think now.

CAROLINE

[KateBall]

I've also just realised that whilst routine and aversion to routine may not be part of Williams (although I don't know that for sure) it could mean my ds has Williams with a bit of AS or ADHD or whatever and hence symptoms across different disorders.

 

Caroline - I quite agree - I don't know what to think or where to go from here.

[KateBall]

By the way this is the link I've been looking at http://www.williams-syndrome.org.uk/about_...nes/parents.htm

[darky]

well i phoned the lab up to see how long it would take to get results for fragile x, and they said 2-3 weeks. i asked them if they tested for other chromosone abnormalities and they said yes they do. before the test for fragile x is done, they do a complete chromosone test and he said williams syndrome may well be picked up or other abnomalities to. i dont know if that varies from region to region, but i feel at rest that at least they are doing a whole batch of stuff to rule things out. he did say though, that some abnormalities COULD be missed.

 

i think all children with ASD especially when they fit "outside" the box, should have blood tests, brain scans, allergy testing etc first to rule out all of this stuff!!

[mummy]

I work with two children with William's sydrome, 1 girl and 1 boy.

 

Their physical features are so clear they could be twins. Generally it is as easily recognisable in appearance as Down Syndrome - you can usually tell instantly if the child has it.

 

Both the children i work with (one is 11 the other 13) both have very poor fine motor skills. the girl (11) has poor gross motor skills too but the boy is in our schools cross country team!

 

They both have moderate to severe learning difficulties. They have huge vocabularies and very adult speech and speech patterns but their understanding is poor.

 

They both have short term memory difficulties.

[KateBall]

I work with two children with William's sydrome, 1 girl and 1 boy.

 

Their physical features are so clear they could be twins. Generally it is as easily recognisable in appearance as Down Syndrome - you can usually tell instantly if the child has it.

 

Both the children i work with (one is 11 the other 13) both have very poor fine motor skills. the girl (11) has poor gross motor skills too but the boy is in our schools cross country team!

 

They both have moderate to severe learning difficulties. They have huge vocabularies and very adult speech and speech patterns but their understanding is poor.

 

They both have short term memory difficulties.

 

 

Thank you. This has helped alot. My ds doesnt have obvious elfin like features. So if thats crucial to the syndrome then I can't see it. But its weird that everything else fits. Poor motor skills, sociable in the wrong way etc etc.