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Original poster

williams syndrome

17 replies

gingegirl · 22/03/2011 18:22

hi, my ds is 23 months old. we are currently waiting for a diagnosis however we have been told by doctors that he has probable williams syndrome.

we have always known that something wasnt quite as it should be, he has global development delay he has pulmonary artery stenosis and dismorfic facial features, although to us he is just beautiful!!!! he is very outging even though my dd is painfully shy!!! he is always smiling now, even though the first year of his life was extremly difficult and he cried constantly!!!!! he still doesnt sleep that well!

Is anyone out there who knows anything about williams syndrome or has a child with ws who could give any advice?

OP posts:
thisisyesterday · 22/03/2011 19:52

I used to work as a mother's help for a family whose eldest child has William's syndrome.
he is.. oooh... 21 now Shock how time flies, he was 6 when i first met him Grin

aaaanyway, he's a lovely young man with many hobbies and interests and leads the fullest life he can

waitingforgodot · 22/03/2011 20:12

I work with 2 young people with William Syndrome. They are the most pleasant, friendly pair I have ever worked with.

waitingforgodot · 22/03/2011 20:14

Gingegirl,
There is also the Williams Syndrome foundation-if you google it you will find lots of info there
x

dolfrog · 22/03/2011 20:54

gingegirl

I was looking for some information regarding Williams Syndrome, and came across this research reference, which may interest you.
Williams Syndrome Williams-Beuren Syndrome at PubMed a large online medical research paper library. Seems to be fairly comprehensive

amberlight · 23/03/2011 12:57

In some ways it's similar to some forms of autism (including the sort I have) - the bit of the brain that controls appropriate social behaviour isn't really wired up, so those with Williams Syndrome treat everyone as their best friend, even if they've only just met them (generalising) and so do I Blush. Working out safe rules for who to trust and what behaviour is ok is really important.
Hope the foundation is able to help...they're good people.

SWMex · 25/03/2011 04:26

sindromedewilliamsymisersingular.blogspot.com/
Just change the languaje on the top in the right corner.
And visit Facebook... there are a page in english
www.facebook.com/williamssyndrome

MedusaIsHavingABadHairDay · 25/03/2011 07:13

I work with two young people with Williams Syndrome, and of all the disabilities in my school, If I had to pick the 'best' I'd say it was these two children, because their amazingly friendly personalities really shine and both have a very enjoyable quality of life. One child was mainstreamed until secondary and is really quite able, the other has a dual diagnosis, and less able but endearing to all he meets. Both are quite typical WS kids. very chatty, over friendly and love music.

Incidentally my own son was tested for Williams because he shares many of the features, (ASD, but indiscriminately friendly) and the most important thing we have had to teach him is social safety..and it's not easy..

Original poster
gingegirl · 25/03/2011 22:03

thanx all for your posts!!!!
our ds is very friendly and a plesure to be around!! most of the time anyway, he does have his moments and absolutly hates being told no!!!!!
as he doesnt talk at the moment communication is difficult and he gets very frusrated ,but he knows the meaning of the word NO thats for sure!!!

Amberlight, i have noticed that he does have some autistic tendancies.
he has been refered to a neurologist so i would suppose this is the reason why then?

Waitinforgodot, do you work in a special unit for disabled children? was wondering what sort of school he would need?

MedusaIsHavingABadHairDay, you said your son was tested, was he diagnosed with anything else? does he have the look of a child with ws?

OP posts:
thisisyesterday · 25/03/2011 22:23

ginge, just looked on your profile and your children are both so cute!!! ds looks a LOT like the WS child I cared for I have to admit, even the hair!

he went to a special needs school (for children with moderate learning disabilities) where he absolutely thrived. They do a LOT of work on social interaction, and teaching them how to cope in the outside world as they get older.

MedusaIsHavingABadHairDay · 26/03/2011 00:05

My DS has madly curly hair, low muscle tone and autism..but is very very over friendly (indiscriminately so) and talks continually (non verbal til 4+).. one way..his obsessions only, and a rather 'slack' mouth .. he does rather have the WS 'look' but is however tall and thin rather than small for age.
In the end they found a chromosome anomaly on chrom 14 but are still unsure if this 'explains' him. However he is very gorgeous..:)

MedusaIsHavingABadHairDay · 26/03/2011 00:07

ps just looked at you pics of your beautiful children and I also think your gorgeous son has a very classic WS look :) It's a beautiful look.. !

Original poster
gingegirl · 28/03/2011 17:18

Thanx both! I think they are both cute but you do look at your own children that way!!!! You are right ws kids are so sweet looking!! Because of the petite features I think, apart from his mouth which is huge!!! But my husband has a rather large mouth also!!!!!!
I found a little boy on the foundations website that looks exactly like him, and that's how I first suggested it to cardiologist and he was thinking the same thing but they never tell you do they!!!!
I wish drs would just say what they are thinking!!!

OP posts:
lourobert · 28/03/2011 19:02

HI,

I dont come on here too often anymore as life just seems too busy. My 5 yr old son has WS. However he is not your typical WS child as he also had infanitle spasms as a baby (severe epilepsy type) which has caused him to be very delayed. He is not yet walking or talking and most likely he wont ever but hes gorgeous

I also grew up with a girl with WS who is now in hr 30's with a son of her own (who also has williams syndrome) she needs support but is marvellous as is her son.

Your photos are lovely. I am some of ds if you want to have a look

waitingforgodot · 28/03/2011 20:23

Hi gingegirl. I work with school leavers so not sure about schooling for your boy. Did you manage to have a look on the foundation website?

Original poster
gingegirl · 29/03/2011 18:20

waitingforgodot, yeah did look at the founation site which was really good! actually on the wsfi website there is a little boy who looks exactly like my ds!! thanx!

hi lourobert, have actually read a thread you were on a while ago. how old was you ds when he was diagnosed? its nice to hear of someone who has ws and has actually got children of their own! gives a little hope of a "normal" life for him maybe?

i had a look at your ds, bless he is so cute! how do you manage to keep those glasses on because i dont know how my ds would ,his nose bridge is non exsistant!!!!ha ha!!!

OP posts:
Original poster
gingegirl · 02/05/2011 22:30

Haven't been on here for a while. Had some bad news on my ds heart scan last week.
Aswell as having pulmonary artery stenosis he also has supravalvular aortic stenosis, which we did expect at some point, but he also has dilated cardiomyopathy which they say has nothing to do with Williams syndrome?
Does anyone else know of anyone with this?
The only time I have ever heard of cardiomyopathy is in the film Beaches, and that does not have a happy ending!!!! So I'm a little bit worried at the moment!!!

OP posts:
Rarch · 01/03/2012 14:03

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